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1.
Qual Life Res ; 28(10): 2641-2650, 2019 Oct.
Article in English | MEDLINE | ID: mdl-31187410

ABSTRACT

PURPOSE: Quality of life (QOL) is an important concept in the field of health and medicine. QOL is a complex concept that is interpreted and defined differently within and between disciplines, including the fields of health and medicine. The aims of this study were to systematically review the literature on QOL in medicine and health research and to describe the country of origin, target groups, instruments, design, and conceptual issues. METHODS: A systematic review was conducted to identify research studies on QOL and health-related quality of life (HRQOL). The databases Scopus, which includes Embase and MEDLINE, CINAHL, and PsycINFO were searched for articles published during one random week in November 2016. The ten predefined criteria of Gill and Feinstein were used to evaluate the conceptual and methodological rigor. RESULTS: QOL research is international and involves a variety of target groups, research designs, and QOL measures. According to the criteria of Gill and Feinstein, the results show that only 13% provided a definition of QOL, 6% distinguished QOL from HRQOL. The most frequently fulfilled criteria were: (i) stating the domains of QOL to be measured; (ii) giving a reason for choosing the instruments used; and (iii) aggregating the results from multiple items. CONCLUSION: QOL is an important endpoint in medical and health research, and QOL research involves a variety of patient groups and different research designs. Based on the current evaluation of the methodological and conceptual clarity of QOL research, we conclude that the majority QOL studies in health and medicine have conceptual and methodological challenges.


Subject(s)
Environmental Health/standards , Medicine/standards , Quality of Life/psychology , Humans
2.
J Eur Acad Dermatol Venereol ; 33(11): 2095-2100, 2019 Nov.
Article in English | MEDLINE | ID: mdl-31062435

ABSTRACT

BACKGROUND: From clinical experience, we know that itch is a major concern for many ichthyosis patients. Nonetheless, no previous studies specifically addressed the issue of itch in ichthyosis. OBJECTIVE: The objective of this study was to specifically address the burden of itch and all its dimensions in ichthyosis patients. METHODS: Ninety-four ichthyosis patients from four different centres were recruited to participate in this cross-sectional, questionnaire-based study. All participants completed the Leuven Itch Scale, a multidimensional self-report instrument that quantifies the frequency, duration, severity, distress, consequences and surface area of itch. RESULTS: Participants included 18 keratinopathic types, 55 autosomal recessive congenital ichthyoses, 11 X-linked recessive ichthyoses (XLRIs), 6 Netherton's ichthyoses, 1 Sjögren-Larsson type, 1 Iocrin ichthyosis and 2 unknown subtypes. Itch occurred in 93% of all patients. In patients with itch, 63% reported that it was often or always present, although most itch episodes were short in duration. Itch, in all its dimensions, was worst in patients with Netherton syndrome. Patients with XLRI had in general a lower itch profile. About half of all ichthyosis patients reported to experience flares during a change in weather, in a hot environment or in stressful situations, whereas a cold environment led to itch in only 26% of patients. The most significant consequences of itching were lesions from scratching, difficulties in falling asleep, bad mood and loss of concentration. CONCLUSIONS: Itch is a major concern in patients with ichthyosis, with significant impact on daily life. Research on future treatments should therefore take itch into consideration and itch should be evaluated in clinical studies. Among the studied subgroups, Netherton patients experienced the most severe consequences.


Subject(s)
Ichthyosis/complications , Pruritus/etiology , Adolescent , Adult , Aged , Cross-Sectional Studies , Diagnostic Self Evaluation , Female , Humans , Male , Middle Aged , Pruritus/complications , Pruritus/diagnosis , Young Adult
3.
J Antimicrob Chemother ; 73(12): 3471-3475, 2018 12 01.
Article in English | MEDLINE | ID: mdl-30169653

ABSTRACT

Background: Drug resistance mutations (DRMs) increasingly jeopardize paediatric HIV programmes in sub-Saharan Africa. As individual monitoring of DRMs and viral loads has limited availability, population data on DRMs are essential to determine first-line susceptibility. Paediatric data from sub-Saharan Africa are scarce and unavailable for Malawi. Objectives: To determine the prevalence of virological failure (VF) and DRMs among ART-naive HIV-infected Malawian children during the first year of first-line ART. Methods: In a prospective cohort of HIV-infected Malawian children, on first-line treatment, children were followed monthly; blood was collected for viral load testing (6 and 12 months) and genotypic resistance testing (12 months). VF was defined as at least one viral load >1000 copies/mL or death after 6 months of ART. DRMs were identified and susceptibility to NRTIs and NNRTIs was scored using the Stanford algorithm and by calculating genotypic susceptibility scores (GSSs). Results: VF occurred in 66% (23/35) of the children during 12 months of follow-up. DRMs were detected in 44% (15/34); all had NNRTI resistance and 12% (4/34) had dual-class NNRTI/NRTI resistance. Reduced susceptibility (DRMs and GSS <3) was seen in 41% (14/34) to their current first-line regimen. High-level resistance was most common for nevirapine [26% (9/34)]. Conclusions: In this first report on VF and DRMs in children on first-line ART in Malawi, the rates of VF and DRMs were alarmingly high. Paediatric HIV programmes in sub-Saharan Africa should emphasize programmatic evaluation of VF and include detection of DRMs to adjust and design adequate first- and second-line regimens and prevent widespread resistance in children.


Subject(s)
Anti-HIV Agents/therapeutic use , Drug Resistance, Viral , HIV Infections/drug therapy , HIV/drug effects , Mutation , Adolescent , Child , Child, Preschool , Female , Follow-Up Studies , Genotype , Genotyping Techniques , HIV/genetics , HIV/isolation & purification , HIV Infections/epidemiology , HIV Infections/virology , Humans , Infant , Malawi/epidemiology , Male , Prevalence , Prospective Studies , Sequence Analysis, DNA , Treatment Failure , Viral Load
4.
Eur J Cardiovasc Nurs ; 16(4): 299-308, 2017 04.
Article in English | MEDLINE | ID: mdl-27470053

ABSTRACT

INTRODUCTION: There is increasing evidence supporting the relationship between family support and patient outcomes. Therefore, involving families in the care of cardiovascular patients is expected to be beneficial for patients. The quality of the encounter with families highly depends on the attitudes of nurses towards the importance of families in patient care. AIM: The aim of this study was to describe the attitudes of nurses towards family involvement in patient care and to investigate the individual contributions of demographic, professional and regional background characteristics. METHOD: A survey was distributed among cardiovascular nurses attending an international conference in Norway and a national conference in Belgium. Nurses were asked to complete a questionnaire, including the Families' Importance in Nursing Care - Nurses' Attitudes scale. The study population consisted of respondents from Belgium ( n = 348) and from Scandinavian countries (Norway, Sweden and Denmark; n = 77). RESULTS: In general, nurses viewed the family as important in care. However, attitudes towards actively inviting families to take part in patient care were less positive. Higher educational level and a main practice role in research, education or management were significantly associated with more positive attitudes. Furthermore, the attitudes of respondents living in Scandinavia were more positive as compared to the attitudes of respondents living in Belgium. CONCLUSION: Education on the importance of families and active family involvement in patient care seems to be necessary in basic, undergraduate education, but also in clinical practice. More research is necessary in order to explore the cultural and regional differences in the attitudes of nurses towards the involvement of families in patient care.


Subject(s)
Attitude of Health Personnel , Cardiovascular Diseases/therapy , Caregivers , Interpersonal Relations , Nursing Staff, Hospital/psychology , Adult , Belgium , Denmark , Female , Humans , Male , Middle Aged , Norway , Sweden
5.
Scand J Rheumatol ; 45(3): 171-8, 2016.
Article in English | MEDLINE | ID: mdl-26399601

ABSTRACT

OBJECTIVES: Persons who are later diagnosed with early rheumatoid arthritis (ERA) often delay their first contact with a health professional after symptom onset. Besides initial symptoms, psychosocial characteristics of individuals may influence their help-seeking behaviour. We explored the role of disease characteristics, illness perception, and coping in patient-related delay before treatment initiation in recently diagnosed patients with ERA. METHOD: This exploratory, cross-sectional study included 112 patients with ERA from the Care for early RA (CareRA) trial for whom complete data on patient-related delay, coping, and illness perception were available. In addition to baseline sociodemographic and clinical data, the patients' psychosocial profiles were assessed with the Utrecht Coping List (UCL) and the revised Illness Perception Questionnaire (IPQ-R). Correlations were measured by Spearman's rho. Using regression analyses, we weighted the association of variables with patient-related delay. RESULTS: Patient-related delay was positively correlated with perceptions of causality including psychological attributions (r = 0.301, p = 0.001), risk factors (r = 0.189, p = 0.045), immunity (r = 0.261, p = 0.005), and passive coping (r = 0.222, p = 0.018). It was negatively correlated with the 28 swollen joint count (SJC28; r = -0.194, p = 0.040), perceptions of treatment control (r = -0.271, p = 0.004), and illness coherence (r = -0.208, p = 0.028). Clinical and psychosocial variables explained 15% and 18%, respectively, of the variability in patient-related delay. CONCLUSIONS: Aside from a lower SJC, a longer patient-related delay was correlated with a passive coping style, a strong conviction of symptom causality, poor expected treatment control, and a feeling of limited illness coherence. Psychosocial aspects influence individuals' help-seeking behaviour and are worth considering when aiming for a reduction in ERA treatment delay.


Subject(s)
Adaptation, Psychological , Arthritis, Rheumatoid/diagnosis , Attitude to Health , Delayed Diagnosis , Help-Seeking Behavior , Perception , Adult , Arthritis, Rheumatoid/psychology , Cross-Sectional Studies , Female , General Practice , Humans , Male , Middle Aged , Patient Acceptance of Health Care/psychology , Prospective Studies , Risk Factors , Severity of Illness Index , Time Factors
6.
Support Care Cancer ; 24(2): 755-761, 2016 Feb.
Article in English | MEDLINE | ID: mdl-26209949

ABSTRACT

PURPOSE: Intravenous catheters are used for the administration of intravenous therapy and for blood sampling. These devices are considered as well-functioning if both the injection and aspiration are easy. Malfunction is frequently observed and usually vaguely described as occlusion. We developed the CINAS, the Catheter Injection and Aspiration scheme. The CINAS is a catheter function classification tool, which classifies both the injection and the aspiration ability in a uniform way. Each CINAS class consists of a combination of an injection (IN) and an aspiration (AS) code: e.g. IN1AS1 is the CINAS class for a well-functioning catheter. In this series, we aimed to determine the accuracy of the CINAS class reported by nurses, after minimal training, versus a trained researcher, acting as a reference standard. METHODS: Catheter function was assessed during a standard blood sampling procedure through a totally implantable venous access device in a convenience sample of 150 oncology patients. One nurse researcher and 111 oncology nurses both scored the catheter function according to the CINAS classification scheme, independently. Concordance between the scores was calculated. RESULTS: For the 140 catheters scored as well-functioning (IN1AS1 score) by the researcher, 139 or 99.3 % (95 % confidence interval (CI) 96.1-99.9 %) were scored correctly by the nurse participants. Nine out of ten or 90 % (95 % CI 55.5-98.3 %) of malfunctioning catheters (researcher scores different from IN1AS1) were also identified as malfunctioning by the nurse participants and received exactly the same CINAS score in eight cases (80 %, 95 % CI 44.4-97.5 %). The overall accuracy of the CINAS scored by the nurse participants versus the researcher is (139 + 9)/150 or 98.7 % (95 % CI 95.3-99.8 %). CONCLUSIONS: Nurse participants were able to classify the catheter function of totally implantable venous access devices with the CINAS accurately after a brief explanation about the classification options.


Subject(s)
Catheterization, Central Venous/methods , Catheters, Indwelling/standards , Aged , Catheterization, Central Venous/classification , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Prospective Studies
7.
BMC Genomics ; 16: 861, 2015 Oct 26.
Article in English | MEDLINE | ID: mdl-26502874

ABSTRACT

BACKGROUND: Methicillin-resistant Staphylococcus aureus (MRSA)-USA300 is notorious for its ability to cause community- and healthcare-acquired infections, which are even more difficult to treat when associated with a biofilm phenotype. We aimed to characterize the genetic determinants of biofilm formation in a USA300 skin abscess isolate (UAS391) that formed prolific biofilms. METHODS: USA300 S. aureus strains, TCH1516 and FPR3757, were found to be closely related based on whole genome mapping (Argus™ Optical Mapping System, Opgen Inc, Gaithersburg, USA) to UAS391 (96.3-99.1 % similarity, P=0.0151), however differed markedly in biofilm formation (P=0.0001) on a dynamic assay (BioFlux 200, Fluxion Biosciences, USA). Comparison of whole genome sequences of these strains identified differences in a total of 18 genes. Corresponding Tn (bursa aurealis-bearing) knockout mutants in these target genes were obtained from a publicly available mutant library of the same clonal lineage (USA300-JE2) and were characterized phenotypically for biofilm formation. Tn mutants showing significant differences in biofilm formation were utilized for transduction into a plasmid-cured erythromycin-sensitive derivative of UAS391 and for complementation experiments. All strains were tested on the dynamic assay, and 17h-biofilms were stained (SYTO9, Life Technologies) and fluorescence intensity quantified by microscopy (Zeiss, ImageJ). Gene expression levels in Tn and transduced mutants were studied by quantitative reverse transcriptase PCR (StepOnePlusTM, Applied Biosystems®). RESULTS: Comparison of the sequenced genomes of TCH1516, FPR3757 and UAS391 yielded a limited number of variant genes (n=18) that were hypothesized to account for the observed difference in biofilm-forming capacity. Screening of Tn mutants disrupted in these target genes identified one mutant (NE229) bearing a transposon insertion in SAUSA300_1119 (fakA), which exhibited increased biofilm formation similar to UAS391 (P=0.9320). Transduction experiments confirmed that fakA::Tn corresponded to 1.9- to 4.6-fold increase in biofilm formation depending on the USA300 strain background (P≤0.0007), while complementation of the TCH1516 wild-type fakA allele in UAS391 resulted in a 4.3-fold reduction in biofilm formation (P<0.0001). CONCLUSIONS: This sequential approach, consisting of strain typing, genome comparison and functional genomics, identified fakA, a recently described fatty acid kinase in S. aureus that is essential for phospholipid synthesis and also impacts the transcription of numerous virulence factors, as a negative regulator of biofilm formation in S. aureus USA300.


Subject(s)
Bacterial Proteins/metabolism , Biofilms/growth & development , Staphylococcus aureus/physiology , Bacterial Proteins/genetics , Genome, Bacterial/genetics , Mutation , Plasmids/genetics , Staphylococcus aureus/enzymology , Staphylococcus aureus/genetics
9.
Br J Dermatol ; 171(1): 73-8, 2014 Jul.
Article in English | MEDLINE | ID: mdl-24506095

ABSTRACT

BACKGROUND: Itch is an unpleasant feeling that leads to scratching. It is a common, but understudied, problem in patients with epidermolysis bullosa (EB). OBJECTIVES: We measured the prevalence and characteristics of itch in the three major forms of EB: generalized EB simplex (EBS), junctional EB (JEB) and dystrophic EB (DEB). METHODS: Forty patients with EB were recruited from two tertiary care centres and one patient organization. The sample included 19 patients with EBS, seven with JEB and 14 with DEB. Patients completed the Leuven Itch Scale (LIS), a multidimensional self-report instrument that quantifies the frequency, duration, severity, distress, consequences and surface area of itch. This instrument has good clinimetric properties. RESULTS: Itch occurred in 85% of the patients, with substantial differences across the subtypes (EBS 74%, JEB 100%, DEB 93%). Itch, in all its dimensions, was most pronounced in patients with JEB and DEB, and less prominent in patients with EBS. The scores were significantly different for itch frequency, severity, distress and surface area, and the overall itch scores were comparable with those of atopic dermatitis. Itch mainly occurred in a hot environment (65%) and when sweating (62%). The most prevalent consequences were difficulty in falling asleep (88%) and lesions from scratching (85%). Differences between the three major subtypes were also observed in terms of circumstances, consequences and sensory characteristics. CONCLUSIONS: As expected, itch is common among patients with EB. All aspects of itch measured by the LIS were more severe in JEB and DEB than in EBS.


Subject(s)
Epidermolysis Bullosa/complications , Pruritus/etiology , Cost of Illness , Cross-Sectional Studies , Epidermolysis Bullosa Dystrophica/complications , Epidermolysis Bullosa, Junctional/complications , Female , Humans , Male , Middle Aged
10.
Colorectal Dis ; 15(11): e672-9, 2013 Nov.
Article in English | MEDLINE | ID: mdl-23692392

ABSTRACT

AIM: Sphincter-saving rectal cancer management affects anorectal function. This study evaluated persisting anorectal dysfunction and its impact on patients' well-being. METHOD: Seventy-nine patients with a follow-up of 12-37 (median 22) months and 79 age- and sex-matched control subjects completed questionnaires. RESULTS: The median number of diurnal bowel movements was three in patients and one in controls (P < 0.0001). Nocturnal defaecation occurred in 53% of patients. The median Vaizey score was 8 in patients and 4 in controls (P < 0.0001). Urgency without incontinence was reported by 47% of patients and 49% of controls (P = 0.873), soiling by 28% of patients and 3% of controls (P < 0.0001), incontinence for flatus by 73% of patients and 49% of controls (P = 0.0019), and incontinence for solid stools by 16% of patients and 4% of controls (P = 0.0153). Incontinence of liquid stools occurred in 17 of 20 patients and in one of five controls who had liquid stools (P = 0.0123). Incontinence for gas, liquid or solid stool occurred once or more weekly in 47%, 19% and 6% of patients respectively. Evacuation difficulties were reported by 98% of patients, but also by 77% of controls. Neoadjuvant radio(chemo)therapy adversely affected defaecation frequency and continence. Incontinence was associated with severe discomfort in 50% of patients, severe anxiety in 40% and severe embarrassment in 48%. CONCLUSION: Anorectal dysfunction is a frequent problem after management of rectal cancer with an impact on the well-being of patients.


Subject(s)
Anal Canal/physiopathology , Anal Canal/surgery , Colon/surgery , Fecal Incontinence/etiology , Postoperative Complications/etiology , Rectal Neoplasms/surgery , Adult , Aged , Aged, 80 and over , Anastomosis, Surgical , Case-Control Studies , Colonic Pouches , Defecation , Fecal Incontinence/physiopathology , Female , Humans , Male , Middle Aged , Neoadjuvant Therapy , Organ Sparing Treatments , Postoperative Complications/physiopathology , Quality of Life , Radiotherapy, Adjuvant , Rectal Neoplasms/radiotherapy , Surveys and Questionnaires
11.
Ann Oncol ; 24(7): 1892-1899, 2013 Jul.
Article in English | MEDLINE | ID: mdl-23553060

ABSTRACT

BACKGROUND: Heparin has been used for years as a locking solution in totally implantable venous access devices. Normal saline (NS) might be a safe alternative for heparin. However, evidence of non-inferiority of NS versus heparin is lacking. PATIENTS AND METHODS: We randomly allocated 802 cancer patients with a newly inserted port either to heparin lock (300 U/3 ml) or to NS lock groups in a 1:1 assignment ratio. The primary outcome was the number of functional complications, which was defined as 'easy injection, impossible aspiration' at port access. Secondary outcomes included all functional problems and catheter-related bacteraemia. We hypothesised that NS locks do not cause more functional problems and catheter-related bacteraemia than heparin locks. Non-inferiority is established if the upper limit of the confidence interval (CI) for the relative risk of NS versus heparin is <1.4. RESULTS: Three hundred and eighty-two patients from the NS group and 383 from the heparin lock group were included in the analysis. The incidence rate of our primary outcome (easy injection, impossible aspiration) was 3.70% (95% CI 2.91%-4.69%) and 3.92% (95% CI 3.09%-4.96%) of accesses in the NS and heparin groups, respectively. The relative risk was 0.94% (95% CI 0.67%-1.32%). Catheter-related bloodstream infection was 0.03 per 1000 catheter days in the NS group and 0.10 per 1000 catheter days in the heparin group. CONCLUSION: NS is a safe and effective locking solution in implantable ports if combined with a strict protocol for device insertion and maintenance.


Subject(s)
Catheterization, Central Venous/methods , Heparin/chemistry , Neoplasms/drug therapy , Sodium Chloride/chemistry , Adolescent , Adult , Aged , Bacteremia/etiology , Catheter-Related Infections/etiology , Catheterization, Central Venous/adverse effects , Catheters, Indwelling/microbiology , Female , Humans , Kaplan-Meier Estimate , Male , Middle Aged , Solutions , Young Adult
12.
Qual Life Res ; 22(6): 1295-304, 2013 Aug.
Article in English | MEDLINE | ID: mdl-22847189

ABSTRACT

PURPOSE: Individuals with serious medical conditions can perceive their health status as good. This might be explained by the symptomatology inherent to the condition. Research in this respect is scarce. Congenital heart disease (CHD) is a spectrum of mild, moderate, and complex heart defects, representing more benign and severe chronic conditions. We investigated (1) symptomatology (i.e., symptom frequency and symptom distress) of CHD patients; (2) the extent to which symptomatology was independently related to perceived health; and (3) the relative importance of individual symptoms for perceived health. METHODS: A secondary data analysis on two separate patient samples (629 Belgian and 1,109 Dutch patients) was conducted. Patients' symptomatology was measured with the TAAQOL-CHD. Perceived health was measured by the EQ-5Dvas in Belgian patients, and by a single item (EVGFP rating) of the SF-36 in Dutch patients. Linear regression analyses were performed to investigate the relationship between symptoms and perceived health, while controlling for sex, age, disease complexity, and functional status. RESULTS: The most frequently occurring symptoms were dizziness, palpitations, and nycturia. Symptom distress was associated with perceived health, independent of confounders. Symptom distress with respect to shortness of breath while walking; palpitations; and dizziness were independently related to perceived health. CONCLUSIONS: Perceived health in CHD patients is partially associated with their symptomatology. This finding underscores the possibility that differences in perceived health across patient groups with more benign and severe conditions may be caused by the different impact conditions have--in terms of symptoms--on the day-to-day life.


Subject(s)
Health Status Indicators , Health Status , Quality of Life , Symptom Assessment/psychology , Belgium , Female , Health Surveys , Heart Defects, Congenital/ethnology , Heart Defects, Congenital/physiopathology , Heart Defects, Congenital/psychology , Humans , Male , Middle Aged , Netherlands , Perception , Regression Analysis , Severity of Illness Index , Socioeconomic Factors , Surveys and Questionnaires
13.
J Nutr Health Aging ; 15(8): 638-44, 2011 Aug.
Article in English | MEDLINE | ID: mdl-21968858

ABSTRACT

OBJECTIVE: Comparison of the first-generation Minimum Geriatric Screening Tools (MGST) and the third-generation interRAI Acute Care (interRAI AC). DESIGN: Based on a qualitative multiphase exchange of expert opinion, published evidence was critically analyzed and translated into a consensus. RESULTS: Both methods are intended for a multi-domain geriatric assessment in acute hospital settings, but each with a different scope and goal. MGST contains a collection of single-domain, internationally validated instruments. Assessment is usually triggered by care givers' clinical impression based on geriatric expertise. A limited selection of domains is usually assessed only once, by disciplines with domain-specific expertise. Clinical use results in improvement to screen geriatric problems. InterRAI AC, tailored for acute settings, intends to screen a large number of geriatric domains. Based on systematic observational data, risk domains are triggered and clinical guidelines are suggested. Multiple observation periods outline the evolution of patients' functioning over stay in comparison to the premorbid situation. The method is appropriate for application on geriatric and non-geriatric wards, filling geriatric knowledge gaps. The interRAI Suite contains a common set of standardized items across settings, facilitating data transfer in transitional care. CONCLUSION: The third-generation interRAI AC has advantages compared to the first-generation MGST. A cascade system is proposed to integrate both, complementary methods in practice. The systematic interRAI AC assessment detects risk domains. Subsequently, clinical protocols suggest components of the MGST as additional assessment. This cascade approach unites the strength of exhaustive assessment of the interRAI AC with domain-specific tools of the MGST.


Subject(s)
Activities of Daily Living , Geriatric Assessment/methods , Geriatrics/methods , Hospitals , Psychological Tests , Aged, 80 and over , Cognition , Humans , Psychometrics
14.
Int J Clin Pract ; 65(10): 1092-9, 2011 Oct.
Article in English | MEDLINE | ID: mdl-21923848

ABSTRACT

BACKGROUND: Sexual problems are common amongst cardiac patients, and concerns may arise when resuming sexual activities after a cardiac event. Sexual counselling is therefore indispensible. Culture is an identified barrier to talking about sex, but research is lacking on whether and how culture influences nurses in providing sexual counselling. DESIGN: This cross-sectional descriptive study assessed four areas related to sexual counselling provided by cardiovascular nurses. We investigated the impact of culture on these areas by surveying cardiovascular nurses living in Denmark, Norway and two regions of Belgium - Flanders, Dutch-speaking region and Wallonia, French-speaking region. METHODS: Overall, 819 participants were recruited as they attended cardiovascular nursing congresses in Denmark, Norway and Belgium. Subjects completed the Undertaking Nursing Interventions Throughout Europe (UNITE) sexual counselling questionnaire, measuring practice, responsibility, confidence and perceived comfort of patients. Controlling for demographic, educational and professional covariates, we performed multiple linear regression analysis to determine the impact of culture on sexual counselling. RESULTS: All four subscale scores were independently associated with culture. Danish nurses counselled patients significantly more often, reported feeling more responsibility and confidence and estimated more comfort in patients than Norwegian, Flemish and Walloon nurses. CONCLUSIONS: This study showed that culture matters with respect to sexual counselling for cardiac patients. Interventions should be developed improving sexual counselling of cardiac patients. Educational courses and training of healthcare professionals on sexual counselling should be more sensitive to sociocultural differences. Cross-cultural perspectives may bias attitudes of professionals as they deal with concerns of cardiac patients about resuming sexual activity.


Subject(s)
Culture , Heart Diseases/nursing , Sex Counseling/methods , Sexual Behavior/ethnology , Sexual Dysfunction, Physiological/nursing , Adult , Clinical Competence/standards , Cross-Sectional Studies , Educational Status , Europe/ethnology , Female , Health Knowledge, Attitudes, Practice , Heart Diseases/ethnology , Humans , Male , Middle Aged , Nursing Care/standards , Patient Satisfaction , Sexual Dysfunction, Physiological/ethnology , Surveys and Questionnaires
15.
Clin Exp Rheumatol ; 28(5): 790-7, 2010.
Article in English | MEDLINE | ID: mdl-20863450

ABSTRACT

OBJECTIVES: Medical follow-up in the most appropriate treatment setting is important for patients with juvenile idiopathic arthritis (JIA). The aims of this study were 1) to identify the settings in which JIA patients are followed up after leaving paediatric rheumatology, and 2) to compare the clinical profile of patients in different settings. METHODS: The Short Form-36, Health Assessment Questionnaire, and linear analogue scale for quality of life were sent to JIA patients older than 16 years, who had been followed in one academic paediatric rheumatology centre from 1994 to 2007 and who did not participate in a structured transitional care program. Forty-four patients participated in this cross-sectional, comparative study. RESULTS: Thirteen patients were no longer in medical follow-up, 6 patients were followed by their general practitioner, and 25 patients were followed by a rheumatologist. All patients treated with glucocorticosteroids, DMARDs and anti-TNF were followed by a rheumatologist. Patients under the care of a rheumatologist had worse physical functioning (U=33.5, p<0.001); greater disability (U=49.0, p=0.001); more pain (U=59.0, p=0.002); and lower quality of life (U=69, p=0.02) than patients not in follow-up. Of the patients no longer in follow-up, 2 (16.7%) had disabilities and 5 (41.7%) reported persistent pain. CONCLUSIONS: The present data indicated that JIA patients with persistent disease and associated functional disabilities tend to remain in the rheumatology circuit. However, the disease of patients leaving specialised rheumatology care is not necessarily controlled. These data may be helpful for organising the proper transfer of patients from paediatric to adult-focused care.


Subject(s)
Adolescent Medicine , Arthritis, Juvenile/rehabilitation , Patient Care Management , Adolescent , Adult , Age Factors , Arthritis, Juvenile/epidemiology , Arthritis, Juvenile/physiopathology , Belgium/epidemiology , Comorbidity , Cross-Sectional Studies , Disability Evaluation , Female , Follow-Up Studies , Health Status , Humans , Male , Pain/epidemiology , Pain/physiopathology , Prognosis , Quality of Life , Recovery of Function , Remission Induction , Severity of Illness Index , Young Adult
16.
BJOG ; 117(6): 683-9, 2010 May.
Article in English | MEDLINE | ID: mdl-20156207

ABSTRACT

OBJECTIVE: To compare the risks of pregnancy complications in women with repaired and unrepaired isolated ventricular septal defect (VSD). DESIGN: A retrospective multicentre study. SETTING: Tertiary centres in the Netherlands and Belgium. METHODS: Women were identified using two congenital heart disease registries. Eighty-eight women were identified who had experienced 202 pregnancies, including 46 miscarriages and nine terminations of pregnancy. Information on each completed pregnancy (n = 147; unrepaired VSD, n = 104; repaired VSD, n = 43) was obtained using medical records and telephone interviews. Data from the Generation R database (prospective cohort study; n = 9667) were used to determine the background risk (controls). Odds ratios and 95% CI were estimated using general estimation equation analysis adjusted for multiple pregnancies per woman, maternal age and parity status. MAIN OUTCOME MEASURES: Adjusted odds ratios (AORs) for developing pregnancy complications in relation to corrective status. RESULTS: Pregnancies in women with an unrepaired VSD were associated with a higher risk of pre-eclampsia (AOR 4.59, 95% CI 2.01-10.5, P < 0.001) compared with controls. No differences were observed when comparing women with repaired VSD and controls. Pregnancies in women with repaired VSD were associated with a higher risk of premature labour (AOR 4.02, 95% CI 1.12-14.4, P = 0.03) and small-for-gestational-age (SGA) births (AOR 4.09, 95% CI 1.27-13.2, P = 0.02) compared with women with unrepaired VSD. CONCLUSIONS: Women with unrepaired VSD are at increased risk of pre-eclampsia, which suggests that it is not a benign condition. In addition, women with repaired VSD are at increased risk of premature labour and SGA births compared with women with unrepaired VSD.


Subject(s)
Heart Septal Defects, Ventricular/surgery , Pregnancy Complications, Cardiovascular/surgery , Pregnancy Outcome , Adult , Female , Humans , Infant, Newborn , Infant, Small for Gestational Age , Pre-Eclampsia/etiology , Pregnancy , Premature Birth/etiology , Recurrence , Retrospective Studies , Risk Factors
17.
Ann Vasc Surg ; 24(2): 205-11, 2010 Feb.
Article in English | MEDLINE | ID: mdl-19748212

ABSTRACT

BACKGROUND: A new endovenous laser wavelength (1,500 nm diode laser) in the treatment of great saphenous vein (GSV) reflux was evaluated. We studied the occlusion rate at 6 months and noted possible side effects. METHODS: In 129 patients, 158 GSVs were treated using the 1,500 nm diode laser. An average linear endovenous energy density of 53.4 J/cm and an average endovenous fluence of 32.21 J/cm(2) were administrated to the vein. RESULTS: The occlusion rate at 6 months postoperative was 93.3%. Some of the nonoccluded veins closed spontaneously. A postoperative foam treatment was necessary in 3.4% of the treated veins. We found a marked shrinkage of the treated veins. There were limited side effects: moderate or severe ecchymosis in 19%, moderate pain in 1%, moderate periphlebitis in 8.2%, with no paresthesias. CONCLUSION: Endovenous laser treatment of the GSV using a 1,500 nm diode laser is effective and safe. The marked shrinkage of the treated veins can guarantee good long-term results.


Subject(s)
Laser Therapy/instrumentation , Lasers, Semiconductor , Saphenous Vein/surgery , Venous Insufficiency/surgery , Adult , Aged , Aged, 80 and over , Ecchymosis/etiology , Equipment Design , Female , Humans , Laser Therapy/adverse effects , Male , Middle Aged , Pain Measurement , Pain, Postoperative/etiology , Phlebitis/etiology , Prospective Studies , Saphenous Vein/diagnostic imaging , Time Factors , Treatment Outcome , Ultrasonography, Doppler, Duplex , Venous Insufficiency/diagnostic imaging
18.
Eur J Cardiovasc Nurs ; 9(1): 24-9, 2010 Mar.
Article in English | MEDLINE | ID: mdl-20005178

ABSTRACT

BACKGROUND: Cardiac patients may experience problems with sexual activity as a result of their disease, medications or anxiety and nurses play an important role in sexual counselling. We studied the practice, responsibility and confidence of cardiac nurses in the sexual counselling of these patients. METHOD: An adapted version of the nurses' survey of sexual counselling of MI patients was administered during a scientific meeting of the Council on Cardiovascular Nursing and Allied Professionals within the European Society of Cardiology. RESULTS: Most of the 157 cardiovascular nurses (87%) who completed the survey felt responsible to discuss sexual concerns with their clients, especially when patients initiated a discussion. However in practice, most respondents rarely addressed sexual issues. The items that nurses reported to counsel patients were closely related to the cardiac disease, symptoms and medications and seldom more sensitive subjects (e.g. foreplay, positions). Nurses estimated that their patients could be upset (67%), embarrassed (72%) or anxious (68%) if they were asked about sexual concerns. One-fifth of the nurses felt they had insufficient knowledge and 40% sometimes hesitated to discuss sexual concerns with clients because they might not know how to answer questions. Additional education on sexuality was significantly related to being more comfortable and active in sexual counselling. CONCLUSION: Although cardiac nurses feel responsible and not anxious discussing patients' sexual concerns, these issues are not often discussed in daily practice. Nurses might need more knowledge and specific practical training in providing information on sexual concerns and sexual counselling to cardiac patients.


Subject(s)
Attitude of Health Personnel , Health Knowledge, Attitudes, Practice , Heart Diseases/nursing , Nursing Staff/psychology , Sex Counseling/statistics & numerical data , Adult , Ambulatory Care Facilities , Anxiety/nursing , Anxiety/psychology , Cardiac Care Facilities , Female , Health Care Surveys , Heart Diseases/psychology , Heart Diseases/rehabilitation , Humans , Male , Middle Aged , Nurse-Patient Relations , Rehabilitation Nursing/methods , Self Concept , Surveys and Questionnaires
19.
BJOG ; 116(12): 1593-601, 2009 Nov.
Article in English | MEDLINE | ID: mdl-19681849

ABSTRACT

OBJECTIVE: To compare the risks of complications during pregnancy in women with repaired and unrepaired atrial septal defects (ASDs) without associated complex cardiac lesions. DESIGN: A retrospective multicentre study. SETTING: Tertiary centres in the Netherlands and Belgium. POPULATION: Women with ASD without associated complex cardiac lesions. METHODS: Women were identified using two congenital heart disease registries. One hundred women were identified who had 243 pregnancies, including 49 miscarriages and six terminations of pregnancy. Detailed information on each completed pregnancy (n = 188; unrepaired ASD, n = 133; repaired ASD, n = 55) was obtained using medical records and telephone interviews. In addition, data from the Generation R database (a prospective cohort study; n = 9667) were used to determine the background risk (control group). MAIN OUTCOME MEASURES: Adjusted odds ratios (AORs) for cardiac, obstetric and neonatal events controlled for multiple pregnancies per woman using general estimating equation analysis. RESULTS: Women with an unrepaired ASD had a higher risk of neonatal events (AOR = 2.99, 95% confidence interval [CI] 1.14-7.89, P = 0.027) than women with a repaired ASD. The risk of cardiac and obstetric complications was comparable between women with unrepaired and repaired ASDs. Compared with the general population, women with an unrepaired ASD had higher risks of pre-eclampsia (AOR = 3.54, 95% CI 1.26-9.98, P = 0.017), small-for-gestational-age births (AOR = 1.95, 95% CI 1.15-3.30, P = 0.013) and fetal mortality (AOR = 5.55, 95% CI 1.77-17.4, P = 0.003). By contrast, no differences were observed when comparing women with a repaired ASD versus controls. CONCLUSIONS: Women with an unrepaired ASD are at increased risk of neonatal events in comparison with women with a repaired ASD. Compared with the general population, women with an unrepaired ASD are at increased risk of pre-eclampsia, small-for-gestational-age births and fetal mortality.


Subject(s)
Heart Septal Defects, Atrial/surgery , Pregnancy Complications, Cardiovascular/epidemiology , Pregnancy Outcome/epidemiology , Adolescent , Adult , Arrhythmias, Cardiac/epidemiology , Arrhythmias, Cardiac/etiology , Belgium/epidemiology , Delivery, Obstetric/methods , Female , Fetal Death/epidemiology , Fetal Death/etiology , Heart Septal Defects, Atrial/epidemiology , Humans , Infant, Newborn , Infant, Small for Gestational Age , Maternal Age , Middle Aged , Netherlands/epidemiology , Pre-Eclampsia/epidemiology , Pre-Eclampsia/etiology , Pregnancy , Pregnancy Complications/epidemiology , Retrospective Studies , Risk Factors , Young Adult
20.
Clin Transplant ; 22(6): 700-9, 2008.
Article in English | MEDLINE | ID: mdl-18673378

ABSTRACT

Symptom experience (occurrence and perceived distress) associated with side effects of immunosuppressive medications in organ transplant patients may well be associated with poorer quality of life and medication non-compliance. The aims of this study were: first, to assess symptom experience in clinically stable adult patients during long-term follow-up after liver transplantation; and second, to study the relationship between symptom experience and medication non-compliance. This cross-sectional study included 123 liver transplant patients. Symptom experience was assessed using the "Modified Transplant Symptom Occurrence and Symptom Distress Scale" (29-item version) at the annual evaluation. According to the duration of follow-up, patients were divided into a short-term (1-4 yr) and a long-term (5-18 yr) cohort. Medication non-compliance was measured using electronic monitoring. Results showed that increased hair growth was the most frequent symptom in both sexes. Symptom distress was more serious in women than in men. The most distressing symptom in women was excessive and/or painful periods, while in men this was impotence. Clear differences were revealed at item level between symptom occurrence and symptom distress in relationship with the two time cohorts and between sexes. No relationship was found between symptom experience and prednisolone non-compliance.


Subject(s)
Immunosuppression Therapy/adverse effects , Immunosuppressive Agents/therapeutic use , Liver Transplantation , Patient Compliance , Adult , Aged , Azathioprine/therapeutic use , Cross-Sectional Studies , Cyclosporine/therapeutic use , Female , Graft Rejection/prevention & control , Humans , Male , Middle Aged , Prednisolone/therapeutic use , Quality of Life , Young Adult
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