Experiences and needs of partners as informal caregivers of patients with major low anterior resection syndrome: A qualitative study.

PURPOSE: After treatment, many rectal cancer survivors are confronted with ongoing bowel problems, called low anterior resection syndrome. The cancer diagnosis and treatment poses a burden on informal caregivers and results in higher levels of psychological distress and loneliness which is persistent after treatment as well. Our study aimed to investigate the experiences and needs of partners as informal caregivers of patients with major low anterior resection syndrome. METHODS: A ground theory study was conducted. Semi-structured interviews with partners as informal caregivers of patients with major low anterior syndrome were performed in three hospitals between 2017 and 2019. In the first phase, maximum variation sampling was used and later theoretical sampling. Data analysis was done using the constant comparative method and investigators triangulation. RESULTS: Twenty partners as informal caregivers were interviewed until data saturation. Low anterior resection syndrome of their partner was overwhelming and they failed to live a normal life. They had the feeling that they stood at the side-line and partly because of that felt lonely. Partners experienced three levels of loneliness: because of their changed own life, the changed life of their partner and the changed life in the environment. CONCLUSION: Low anterior resection syndrome has a large impact on the lives of partners as informal caregivers and induces loneliness at three levels. It is key that the HCPs of the interdisciplinary team understand this impact. A clinical nurse specialist/oncology nurse navigator could help in alleviate that burden by addressing both patients' and partners' needs.

A legal framework on advanced practice nursing in Belgium: what do we and don't we know?

OBJECTIVES: Presenting the Belgian new framework for Advanced Practice Nursing (APN) - 'Verpleegkundig Specialist [VS]'/"Infirmier de pratique avancée [IPA]" outlined in the Law of 22 April 2019, followed by a discussion of the lack of clarity, the current challenges and future opportunities. METHODS: The framework was analyzed by an expert in healthcare legislation and discussed by academics in Nursing Science and members of the board of directors of the Belgian Society of APN. RESULTS: Relevant paragraphs within this new law are"Article 46 §1. No one is allowed to carry the title of 'VS/IPA' who does not possess a bachelor in nursing mentioned in article 45 and who does not meet the requirements specified in this article. At the minimum, a master's degree in Nursing Sciences is also required. §2. Additional to the scope of practice of nursing as mentioned in article 46, the 'VS/IPA' perform, in the context of complex nursing care, medical interventions in order to maintain, improve or restore the health of the patient. Care is provided in the context of a specific target group of patients and in close concertation with the physician and potential other healthcare professionals. CONCLUSION: Although the legal recognition of the title of VS/IPA is a major breakthrough that will innovate healthcare, clarification is needed: How do VS/IPA distinguish themselves from other nursing functions, what is complex nursing care, which medical interventions can be performed, what is meant by specific target group of patients, what does 'in close concertation with the physician' entail, and will advisory power be possible?

The trajectory of hope and loneliness in rectal cancer survivors with major low anterior resection syndrome: A qualitative study.

PURPOSE: Rectal cancer survivors are often confronted with long-term bowel function impairment, called low anterior resection syndrome. This has a large impact on patients' lives. The aim was to explore the experiences of patients with major low anterior resection syndrome with a specific focus on hope and loneliness. METHODS: A grounded theory approach was used. Individual semi-structured interviews (n = 28) were performed between 2017 and 2019. Patients were recruited in three hospitals and a call was distributed in two patients' organizations. During data analysis, the constant comparative method and investigators' triangulation was used. RESULTS: Hope was important at different stages in the trajectory. After treatment patients hoped to pick up their previous life. Confrontation with low anterior resection syndrome was unexpected and patients hoped to manage it through trial and error. They lost hope if further improvement was absent. At that turning point some tried to accept the new lifestyle, others pushed their boundaries and some opted for a permanent stoma. Loneliness presented itself in several layers. Patients experience loneliness due being toilet-bound, changes in their lives and activities outside their homes and the impact on their family life. CONCLUSION: Assessment of the impact on patients' lives and tailored counselling is possible if healthcare professionals gain more insight into the different layers of loneliness and where the patient is located in the trajectory of hope.

Silicone adhesive multilayer foam dressings as adjuvant prophylactic therapy to prevent hospital-acquired pressure ulcers: a pragmatic noncommercial multicentre randomized open-label parallel-group medical device trial.

BACKGROUND: Silicone adhesive multilayer foam dressings are used as adjuvant therapy to prevent hospital-acquired pressure ulcers (PUs). OBJECTIVES: To determine whether silicone foam dressings in addition to standard prevention reduce the incidence of PUs of category 2 or worse compared with standard prevention alone. METHODS: This was a multicentre, randomized controlled medical device trial conducted in eight Belgian hospitals. At-risk adult patients were centrally randomized (n = 1633) to study groups based on a 1 : 1 : 1 allocation: experimental groups 1 (n = 542) and 2 (n = 545) - pooled as the treatment group - and the control group (n = 546). The experimental groups received PU prevention according to hospital protocol, and a silicone foam dressing on the relevant body sites. The control group received standard of care. The primary endpoint was the incidence of a new PU of category 2 or worse at the studied body sites. RESULTS: In the intention-to-treat population (n = 1605), PUs of category 2 or worse occurred in 4·0% of patients in the treatment group and 6·3% in the control group [relative risk (RR) 0·64, 95% confidence interval (CI) 0·41-0·99, P = 0·04]. Sacral PUs were observed in 2·8% and 4·8% of the patients in the treatment group and the control group, respectively (RR 0·59, 95% CI 0·35-0·98, P = 0·04). Heel PUs occurred in 1·4% and 1·9% of patients in the treatment and control groups, respectively (RR 0·76, 95% CI 0·34-1·68, P = 0·49). CONCLUSIONS: Silicone foam dressings reduce the incidence of PUs of category 2 or worse in hospitalized at-risk patients when used in addition to standard of care. The results show a decrease for the sacrum, but no statistical difference for the heel and trochanter areas.

Factors associated with costs of care in community-dwelling persons with dementia from a third party payer and societal perspective: a cross-sectional study.

BACKGROUND: Besides the importance of estimating the global economic impact of care for persons with dementia, there is an emerging need to identify the key factors associated with this cost. The aim of this study was to analyze associations between the cost of care in community-dwelling persons with dementia and caregiver characteristics from both the healthcare third party payer perspective and the societal perspective. METHODS: Several characteristics based on the cross-sectional data of 355 dyads of informal caregivers and persons with dementia living in Belgium were identified to include in a log-gamma generalized linear model and were used in a multiple linear regression model with bootstrapping to test robustness. RESULTS: The mean monthly cost of care for a community-dwelling person with dementia was estimated at € 2339 (95% CI € 2133 - € 2545) per person from a societal perspective and at € 968 (95% CI € 825 - € 1111) per person from a third party payer viewpoint. Informal care accounted for the majority of the monthly costs from the societal perspective. Community based healthcare resource use represented the largest cost from the third party perspective. According to the regression analyses, a higher level of functional dependency of the person with dementia and a higher educational level of the caregiver were associated with a higher monthly cost from both a third party payer perspective and a societal perspective. In addition, being retired and a higher quality of life in the caregivers were associated with a lower monthly cost of care from the societal perspective. CONCLUSIONS: Several characteristics of the caregiver and the person with dementia were associated with the monthly costs of care from a third party payer and a societal perspective. Despite the lack of clear causal relationships, the results of this study can assist policy makers in planning and financing future dementia care. TRIAL REGISTRATION: Clinicaltrials.gov NCT02630446, December 15, 2015.

Standardizing the classification of skin tears: validity and reliability testing of the International Skin Tear Advisory Panel Classification System in 44 countries.

BACKGROUND: Skin tears are acute wounds that are frequently misdiagnosed and under-reported. A standardized and globally adopted skin tear classification system with supporting evidence for diagnostic validity and reliability is required to allow assessment and reporting in a consistent way. OBJECTIVES: To measure the validity and reliability of the International Skin Tear Advisory Panel (ISTAP) Classification System internationally. METHODS: A multicountry study was set up to validate the content of the ISTAP Classification System through expert consultation in a two-round Delphi procedure involving 17 experts from 11 countries. An online survey including 24 skin tear photographs was conducted in a convenience sample of 1601 healthcare professionals from 44 countries to measure diagnostic accuracy, agreement, inter-rater reliability and intrarater reliability of the instrument. RESULTS: A definition for the concept of a 'skin flap' in the area of skin tears was developed and added to the initial ISTAP Classification System consisting of three skin tear types. The overall agreement with the reference standard was 0·79 [95% confidence interval (CI) 0·79-0·80] and sensitivity ranged from 0·74 (95% CI 0·73-0·75) to 0·88 (95% CI 0·87-0·88). The inter-rater reliability was 0·57 (95% CI 0·57-0·57). The Cohen's Kappa measuring intrarater reliability was 0·74 (95% CI 0·73-0·75). CONCLUSIONS: The ISTAP Classification System is supported by evidence for validity and reliability. The ISTAP Classification System should be used for systematic assessment and reporting of skin tears in clinical practice and research globally. What's already known about this topic? Skin tears are common acute wounds that are misdiagnosed and under-reported too often. A skin tear classification system is needed to standardize documentation and description for clinical practice, audit and research. What does this study add? The International Skin Tear Advisory Panel Classification System was psychometrically tested in 1601 healthcare professionals from 44 countries. Diagnostic accuracy was high when differentiating between type 1, 2 and 3 skin tears using a set of validated photographs.

Core elements of the interpersonal care relationship between nurses and older patients without cognitive impairment during their stay at the hospital: A mixed-methods systematic review.

BACKGROUND: The fundamental importance of establishing an interpersonal care relationship for quality nursing care has been highlighted. However specific elements of the interpersonal care relationship of importance to older patients in the hospital have not been identified. OBJECTIVES: The aim of this review was to explore and synthesise research findings regarding the elements of the interpersonal care relationship concept from the perspectives of older patients. DESIGN: A systematic mixed-methods review. DATA SOURCES: An extensive search was conducted up until October 2018 for articles without any publication date time limit in PubMed, Web of Science, Cochrane Database of Systematic Reviews and CINAHL. REVIEW METHODS: Primary studies were included if they concerned patients aged 65 years or older and their perspectives on the elements of the interpersonal care relationship with nurses. Inclusion was limited to patients without cognitive impairment who were admitted to an acute hospital setting. The methodological quality of each study was assessed using the Critical Appraisal Skills Programme for qualitative studies, the Quality Assessment Tool for Quantitative Studies and the Mixed-Methods Appraisal Tool. Thematic analysis was used to structure the results of the included studies. RESULTS: Of the 7596 studies found, 24 were included in this review. Twenty articles had a qualitative, three a quantitative and one a mixed methods design. Older patients consider dignity and respect as core values that need to be met in the interpersonal care relationship. Five core elements of the interpersonal care relationship were identified to meet these core values: elements related to caring behaviour and attitude, person-centred care, patient participation, communication and situational aspects. These core elements were structured according to three categories, identified in the literature, that determine the quality of the interpersonal care relationship: nurse-, older-patient-related elements and situational aspects. CONCLUSIONS: The elements identified in this review can guide efforts to define the interpersonal care relationship between older patients and nurses. Nurses should be supported and motivated by education and practice to adapt their behaviour, attitudes and communication to meet older patients' expectations. Hospital management can also encourage nurses to communicate well. Investment in the current organisation of care is needed to improve nurses' work overload and presence. Further research is needed to clarify the underlying processes influencing the experience of the interpersonal care relationship from the perspectives of older patients, nurses, informal caregivers and hospital management.

Show yourself, a short film to show professionals at an admission ward your 'euthymic being' during an admission for mania.

BACKGROUND: The progress and recovery of a patient with mania during hospitalization is differently seen by professionals working at an admission ward and by relatives of the patient. Professionals often indicate that the situation of the patient is improving while relatives estimate the improvement to be minimal in relation to the recovery of the patient. OBJECTIVE(S): To develop an intervention to give professionals at an admission ward an impression of the patient in a euthymic mood state to provide professionals with information to plan and conduct individualized patient centred care. METHODS: Professionals, patients, and relatives were individually interviewed about the preferable content and use of a film in which patients' shows their 'euthymic being'. Content analysis was performed. RESULTS: An outline for the content and use of the film was developed. CONCLUSIONS: The intervention holds promise for clinical practice, but further development and testing is necessary.

Towards an international language for incontinence-associated dermatitis (IAD): design and evaluation of psychometric properties of the Ghent Global IAD Categorization Tool (GLOBIAD) in 30 countries.

BACKGROUND: Incontinence-associated dermatitis (IAD) is a specific type of irritant contact dermatitis with different severity levels. An internationally accepted instrument to assess the severity of IAD in adults, with established diagnostic accuracy, agreement and reliability, is needed to support clinical practice and research. OBJECTIVES: To design the Ghent Global IAD Categorization Tool (GLOBIAD) and evaluate its psychometric properties. METHODS: The design was based on expert consultation using a three-round Delphi procedure with 34 experts from 13 countries. The instrument was tested using IAD photographs, which reflected different severity levels, in a sample of 823 healthcare professionals from 30 countries. Measures for diagnostic accuracy (sensitivity and specificity), agreement, interrater reliability (multirater Fleiss kappa) and intrarater reliability (Cohen's kappa) were assessed. RESULTS: The GLOBIAD consists of two categories based on the presence of persistent redness (category 1) and skin loss (category 2), both of which are subdivided based on the presence of clinical signs of infection. The agreement for differentiating between category 1 and category 2 was 0·86 [95% confidence interval (CI) 0·86-0·87], with a sensitivity of 90% and a specificity of 84%. The overall agreement was 0·55 (95% CI 0·55-0·56). The Fleiss kappa for differentiating between category 1 and category 2 was 0·65 (95% CI 0·65-0·65). The overall Fleiss kappa was 0·41 (95% CI 0·41-0·41). The Cohen's kappa for differentiating between category 1 and category 2 was 0·76 (95% CI 0·75-0·77). The overall Cohen's kappa was 0·61 (95% CI 0·59-0·62). CONCLUSIONS: The development of the GLOBIAD is a major step towards a better systematic assessment of IAD in clinical practice and research worldwide. However, further validation is needed.

Factors influencing the process of medication (non-)adherence and (non-)persistence in breast cancer patients with adjuvant antihormonal therapy: a qualitative study.

Non-adherence and non-persistence in breast cancer patients taking antihormonal therapy (AHT) is common. However, the complex patterns and dynamics of adherence and persistence are still not fully understood. This study aims to give insight into the process of (non-)adherence and (non-)persistence by researching influencing factors and their interrelatedness in breast cancer patients taking AHT by means of a qualitative study with semi-structured interviews. The sample consisted of 31 breast cancer patients treated with AHT. Purposive and theoretical sampling and the constant comparison method based on a grounded theory approach were used. Expectations regarding the impact of AHT, social support from family and friends, and recognition from healthcare professionals were found to influence the process of non-adherence and non-persistence. The results of this study can help healthcare professionals understand why breast cancer patients taking AHT do not always adhere to or persist in taking the therapy and may facilitate patient-tailored interventions.

Perspectives of oncology health workers in Flanders on caring for patients of non-Western descent.

This study was undertaken to gain insight in the views and experiences of oncology healthcare providers in Flanders, the Dutch-speaking part of Belgium, on caring for patients of non-Western descent. A qualitative research design with the constant comparative method was used. Data were collected through five focus group interviews, with 23 oncology health workers as participants. Barriers and difficulties were paramount in the provision of care to patients of non-Western descent. Participants want to act according to their professional standards, which call for treating all patients equally and providing appropriate care. However, a focus on medical aspects occurs, wherein 'cure' takes precedence over 'care', when participants were not willing or not fully able to overcome barriers. This results in feelings of inadequacy in those participants who equate professional standards to care of equal quality. Participants who interpreted their professional standard as equivalent care were irritated by 'these' patients who restrained them from providing appropriate care. The findings indicate that professional standards provide protection against possible discrimination that may result from personal beliefs. Extending professional standards from 'treating all patients equally' to 'care attuned to each patient' might be a way to prevent 'cure' taking precedence over 'care'.

Balancing truth-telling: relatives acting as translators for older adult cancer patients of Turkish or northwest African origin in Belgium.

The first generation of Turkish and Northwest African immigrants in Belgium are ageing and at risk for developing cancer. Relatives play an important role and provide both emotional and practical care, including mental support and acting as a contact person and/or a translator for improving access to healthcare, as most patients and their spouses have only a limited command of the language. Although access to professional interpreters has shown to be the best guarantee for qualitative healthcare, oncology health providers working with relatives as interpreters is much more common than professional interpreters. The aim of this study was to provide insight into the process wherein relatives balance truth-telling in translating for an older family member diagnosed with cancer. This was a qualitative research study, with elements of constructivist grounded theory. Twenty-eight loosely structured interviews were conducted. Most relatives consider it their responsibility to contribute to a positive attitude of the patient. Relatives decided to what extent they inform the patient, based on several motives and embedded in their assessment of the patient's emotional strength, understanding and need to be informed. What they decide influences the way they act as a translator and/or a contact person between the patient and health professional(s). Some considered it best to omit medical information while others considered it best to inform the patient fully. The results emphasise the importance for healthcare providers to take into account the complexity and unpredictable character of the process of balancing truth-telling when family members translate for their ill older relative.

The prevalence of unplanned pregnancy ending in birth, associated factors, and health outcomes.

STUDY QUESTION: What are associated factors of unplanned pregnancies ending in birth? SUMMARY ANSWER: Pregnancies that were less planned were associated with women of lower socio-economic status (SES), an unhealthier lifestyle before and during the pregnancy, more stress, and less social support. WHAT IS KNOWN ALREADY: In Europe, the prevalence of unplanned pregnancy leading to birth varies. Unplanned pregnancy is more common among socially disadvantaged women, and associated with adverse pregnancy outcomes. STUDY DESIGN, SIZE, DURATION: In a cross-sectional study, 517 women were recruited from May through September 2015. PARTICIPANTS/MATERIALS, SETTING, METHODS: Women were recruited from six hospitals in Flanders, Belgium. Data from self-report and medical records were collected during the first 5 days postpartum. The validated London Measure of Unplanned Pregnancy was used to collect data regarding pregnancy planning. Data were analysed with Mann-Whitney U tests, Kruskal-Wallis tests, and multiple linear regression analysis. MAIN RESULTS AND THE ROLE OF CHANCE: The majority of the pregnancies (83%) ending in birth were planned, 15% were ambivalent, and 2% unplanned. Women who are multigravida (95% CI -0.30 to -0.02), less well educated (95% CI 0.07-0.85), single or having a non-cohabiting relationship (95% CI 0.01-2.53), having history of drug abuse (95% CI -2.07 to -0.35), and experiencing intimate partner violence (95% CI -3.82 to -1.59) tended to have a significantly higher risk of a less planned pregnancy. Less planned pregnancies were significantly associated with initially unwanted pregnancies (P < 0.001), no folic acid or vitamin use before pregnancy (P < 0.001), lower number of prenatal visits (P = 0.03), smoking during pregnancy (P < 0.001), more stress (P = 0.002), lower relationship satisfaction (P = 0.001), and less social support (P < 0.001). Less planned pregnancies were also significantly associated with hyperemesis (P < 0.001) and shorter duration of delivery (P = 0.03). No differences were found in neonatal outcomes. LIMITATIONS, REASONS FOR CAUTION: The prevalence of unplanned pregnancies is probably underestimated due to overrepresentation of women with higher SES in this study. Women's emotions may have influenced the answer to certain questions. Owing to the cross-sectional design, no causal relationships could be established. WIDER IMPLICATIONS OF THE FINDINGS: This study emphasizes the importance of targeting socially disadvantaged women in the prevention of unplanned pregnancies. STUDY FUNDING/COMPETING INTERESTS: This study was funded by the Research Foundation - Flanders (FWO). The authors have no conflict of interests. TRIAL REGISTRATION NUMBER: Not applicable.

Hope dies last A qualitative study into the meaning of hope for people with cancer in the palliative phase.

Palliative patients may have strong hope, even hope for a cure, despite knowing their prognosis. Health professionals do not always understand patients who have this kind of hope. The aim of this article was to explore the meaning of hope among patients with cancer in the palliative phase. A secondary analysis was conducted including a constant comparative analysis to uncover the processes underlying the maintenance of hope, of previously collected interview data (n = 76). The meaning of hope is related to the importance of the object it is attached to, rather than to a real chance of achieving this object. Hope has a dual function: patients hope because they cannot forsake it and because they benefit so much from it. Hope can spring from many sources and is influenced by various factors. If there are fewer potent sources to tap into, people create hope themselves and this type of self-created hope takes more effort to maintain. Patients use different strategies to increase their hope, described as the 'the work of hope'. A better understanding of the work of hope can lead to better psychosocial support by health professionals. Health professionals convey many messages that affect the work of hope.

Development of a Quality of Meals and Meal Service Set of Indicators for Residential Facilities for Elderly.

OBJECTIVES: To develop a content validated set of indicators to evaluate the quality of meals and meal service in residential facilities for elderly. Inadequate food intake is an important risk factor for malnutrition in residential facilities for elderly. Through better meeting the needs and preferences of residents and optimization of meals and meal service, residents' food intake can improve. No indicators were available which could help to guide strategies to improve the quality of meals and meal service. DESIGN: The indicator set was developed according to the Indicator Development Manual of the Dutch Institute for Health Care Improvement (CBO). The working group consisted of three nurse researchers and one expert in gastrology and had expertise in elderly care, malnutrition, indicator development, and food quality. A preliminary list of potential indicators was compiled using the literature and the working group's expertise. Criteria necessary to measure the indicator in practice were developed for each potential indicator. In a double Delphi procedure, the list of potential indicators and respective criteria were analyzed for content validity, using a multidisciplinary expert panel of 11 experts in elderly meal care. RESULTS: A preliminary list of 20 quality indicators, including 45 criteria, was submitted to the expert panel in a double Delphi procedure. After the second Delphi round, 13 indicators and 25 criteria were accepted as having content validity. The content validity index (CVI) ranged from 0.83 to 1. The indicator set consisted of six structural, four result, and three outcome indicators covering the quality domains food, service and choice, as well as nutritional screening. The criteria measure diverse aspects of meal care which are part of the responsibility of kitchen staff and health care professionals. CONCLUSION: The 'quality of meals and meal service' set of indicators is a resource to map meal quality in residential facilities for elderly. As soon as feasibility tests in practice are completed, the indicator set can be used to guide meal and meal service quality improvement projects in collaboration with kitchen staff and health care professionals. These improvement projects will help to improve food intake and reduce the risk of malnutrition among elders living in residential facilities.

The electronic, personalizable Rosetta system for dementia care: exploring the user-friendliness, usefulness and impact.

PURPOSE: This research aimed to integrate three previously developed assistive technology (AT) systems into one modular, multifunctional system, which can support people with dementia and carers throughout the course of dementia. . In an explorative evaluation study, the integrated system, called Rosetta, was tested on usefulness, user-friendliness and impact, in people with dementia, their informal carers and professional carers involved. The Rosetta system was installed in participants' homes in three countries: The Netherlands, Germany and Belgium. METHODS: Controlled trial with pre- and post-test measures across three countries (randomized controlled trial in Germany; matched groups in the Netherlands and Belgium). Participants completed questionnaires for impact measurement and participated in semi-structured interviews regarding usefulness and user-friendliness of Rosetta. RESULTS: All participants agreed that Rosetta is a very useful development. They did not rate the user-friendliness of the system highly. No significant effects were found on impact measurements. CONCLUSION: All participants found Rosetta a very useful development for future care, and would consider using it. Since Rosetta was still in development during evaluation, a discrepancy between expectations and actual functioning of Rosetta existed, which may explain the lack of findings on the impact of the system and the low appreciation of user-friendliness. Implications for Rehabilitation People with dementia and carers find assistive technology (AT) a useful future development and they are willing to use it in the future. People with dementia and carers have little privacy issues with AT. If they have concerns, they are willing to accept the trade-off of reduced privacy in exchange for the ability to live in their own homes for longer. Given that a system works flawlessly, informal carers indicate that integrated AT can reduce their burden and stress. This can in turn help informal carers to provide better care for a longer period of time.

Work participation in patients with systemic sclerosis: a systematic review.

OBJECTIVES: With this systematic review an overview is given of what is known about work participation in patients with systemic sclerosis (SSc). METHODS: The databases Pubmed, Cinahl, Nursing and Allied Health and PsychARTICLES have been checked from 1980 onwards. The search string consisted of all combinations of key words for work participation and SSc. Two investigators evaluated the eligibility for the articles. Reference lists were searched for other studies. RESULTS: Eight quantitative and one qualitative study were scrutinised in depth. The percentage of patients not working ranges from 18% to 61%. A meta-analysis of the percentage patients not working was performed and a weight mean of 37% was found. The following parameters are associated with the work variable in multivariate analysis (number of studies in which the variable was independently associated with the work variable/number of studies in which the variable was multivariately assessed): global disability (4/5), health (3/5), educational level (2/4), disease duration (3/3), skin/lung involvement (1/3), age/fatigue/muscle involvement/hand function (1/2) and having a decreased income/race/social support/physically demanding job (1/1). In the qualitative study, management of the work situation, disclosure of limitations at the work force and adaptation of resources in daily life are discussed. CONCLUSIONS: Most studies concerning work participation are at this very moment quantitative and cross-sectionally designed. Longitudinal studies are needed to assess causality and qualitative research may be opportune to have a more comprehensive view on the topic of work participation in patients with SSc.

Determinants and associated factors influencing medication adherence and persistence to oral anticancer drugs: a systematic review.

BACKGROUND AND AIMS: The use of oral anticancer drugs has increased in modern oncology treatment. The move from intravenous treatments towards oral anticancer drugs has increased the patients' own responsibility to take oral anticancer drugs as being prescribed. High rates of non-adherence to oral anticancer drugs have been reported. A systematic literature review was conducted to gain insight into determinants and associated factors of non-adherence and non-persistence in patients taking oral anticancer therapy. REVIEW METHODS: PubMed, Cochrane, Web of Science and Cinahl were systematically searched for studies focusing on determinants and associated factors of medication non-adherence and non-persistence to oral anticancer drugs. The methodological quality of the included studies was assessed by two independent reviewers. No studies were excluded based on the quality assessment. RESULTS: Twenty-five studies were included and systematically reviewed. The quality of the studies was moderate. Associated factors influencing medication non-adherence and non-persistence to oral anticancer drugs are multifactorial and interrelated. Older and younger age, and the influence of therapy related side effects were found to be predominant factors. CONCLUSION: Non-adherence and non-persistence to oral anticancer drug therapy are complex phenomena. More qualitative research is needed to facilitate the development of patient tailored complex interventions by exploring patients' needs and underlying processes influencing medication non-adherence and non-persistence to oral anticancer drugs.

Multi-stage versus single-stage inflation and deflation cycle for alternating low pressure air mattresses to prevent pressure ulcers in hospitalised patients: a randomised-controlled clinical trial.

INTRODUCTION: The duration and the amount of pressure and shear must be reduced in order to minimize the risk of pressure ulcer development. Alternating low pressure air mattresses with multi-stage inflation and deflation cycle of the air cells have been developed to relieve pressure by sequentially inflating and deflating the air cells. Evidence about the effectiveness of this type of mattress in clinical practice is lacking. AIM: This study aimed to compare the effectiveness of an alternating low pressure air mattress that has a standard single-stage inflation and deflation cycle of the air cells with an alternating low pressure air mattress with multi-stage inflation and deflation cycle of the air cells. METHODS AND MATERIALS: A randomised controlled trial was performed in a convenience sample of 25 wards in five hospitals in Belgium. In total, 610 patients were included and randomly assigned to the experimental group (n=298) or the control group (n=312). In the experimental group, patients were allocated to an alternating low pressure air mattress with multi-stage inflation and deflation cycle of the air cells. In the control group, patients were allocated to an alternating low pressure air mattress with a standard single-stage inflation and deflation cycle of the air cells. The outcome was defined as cumulative pressure ulcer incidence (Grade II-IV). An intention-to-treat analysis was performed. RESULTS: There was no significant difference in cumulative pressure ulcer incidence (Grade II-IV) between both groups (Exp.=5.7%, Contr.=5.8%, p=0.97). When patients developed a pressure ulcer, the median time was 5.0 days in the experimental group (IQR=3.0-8.5) and 8.0 days in the control group (IQR=3.0-8.5) (Mann-Whitney U-test=113, p=0.182). The probability to remain pressure ulcer free during the observation period in this trial did not differ significantly between the experimental group and the control group (log-rank χ(2)=0.013, df=1, p=0.911). CONCLUSION: An alternating low pressure air mattress with multi-stage inflation and deflation of the air cells does not result in a significantly lower pressure ulcer incidence compared to an alternating low pressure air mattress with a standard single-stage inflation and deflation cycle of the air cells. Both alternating mattress types are equally effective to prevent pressure ulcer development.

Atypical parkinsonism in Guadeloupe: a common risk factor for two closely related phenotypes?

In Guadeloupe, there is an abnormally high frequency of atypical parkinsonism. Only one-third of the patients that develop parkinsonian symptoms were reported to present the classical features of idiopathic Parkinson disease and one-third a syndrome resembling progressive supranuclear palsy (PSP). The others were unclassifiable, according to established criteria. We carried out a cross-sectional study of 160 parkinsonian patients to: (i) define more precisely the clinical phenotypes of the PSP-like syndrome and the parkinsonism that was considered unclassifiable in comparison with previously known disorders; (ii) define the neuropsychological and brain imaging features of these patients; (iii) evaluate to what extent a candidate aetiological factor, the mitochondrial complex I inhibitor annonacin contained in the fruit and leaves of the tropical plant Annona muricata (soursop) plays a role in the neurological syndrome. Neuropsychological tests and MRI were used to classify the patients into those with Parkinson's disease (31%), Guadeloupean PSP-like syndrome (32%), Guadeloupean parkinsonism-dementia complex (PDC, 31%) and other parkinsonism-related disorders (6%). Patients with a PSP-like syndrome developed levodopa-resistant parkinsonism, associated with early postural instability and supranuclear oculomotor dysfunction. They differed, however, from classical PSP patients by the frequency of tremor (>50%), dysautonomia (50%) and the occurrence of hallucinations (59%). PDC patients had levodopa-resistant parkinsonism associated with frontosubcortical dementia, 52% of these patients had hallucinations, but, importantly, none had oculomotor dysfunction. The pattern of neuropsychological deficits was similar in both subgroups. Cerebral atrophy was seen in the majority of the PSP-like and PDC patients, with enlargement of the third ventricle and marked T2-hypointensity in the basal ganglia, particularly the substantia nigra. Consumption of soursop was significantly greater in both PSP-like and PDC patients than in controls and Parkinson's disease patients. In conclusion, atypical Guadeloupean parkinsonism comprises two forms of parkinsonism and dementia that differ clinically by the presence of oculomotor signs, but have similar cognitive profiles and neuroimaging features, suggesting that they may constitute a single disease entity, and both were similarly exposed to annonaceous neurotoxins, notably annonacin.