Search

OBJECTIVE: In the Netherlands HIV nursing consultants have participated in HIV-care since 1985; their profession has changed with developments in HIV-treatment over time. The study goal was to gather information about their role in HIV-care and to provide an useful example to other (HIV-)care settings over the world. METHODS: Interviews were held with HIV nursing consultants from all AIDS treatment centres. Descriptive analyses and statistical tests to detect differences between centres categorized by care model (parallel/unstructured/alternating), were performed. RESULTS: 58% centres perform substitution of care. HIV nursing consultants see almost all patients at least once a year and see all patients when treatment is started/altered. The frequency of consultations for HIV-patients in stable condition varies, 2-4 times a year. Substitution leads to a slight, non-significant decrease in number of consultations. Adherence support is provided at the start of and during treatment. Regular patient discussions are common. All respondents are acquainted with the guidelines. Detailed knowledge of the adherence issues is limited: 58.3% had read the adherence chapter. CONCLUSION: Substitution of care model is an appropriate and effective method for the management of HIV-infected patients. PRACTICE IMPLICATIONS: Further development of and research into this new role of HIV nurse consultants is appropriate. [ABSTRACT FROM AUTHOR]

YJG Korpershoek,1,2 SCJM Vervoort,3 LIT Nijssen,2 JCA Trappenburg,2 MJ Schuurmans1,2 1Research Group Chronic Illnesses, Faculty of Health Care, University of Applied Sciences Utrecht, 2Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, 3Cancer Center, University Medical Center Utrecht, Utrecht, the Netherlands Background: In patients with COPD, self-management skills are important to reduce the impact of exacerbations. However, both detection and adequate response to exacerbations appear to be difficult for some patients. Little is known about the underlying process of exacerbation-related self-management. Therefore, the objective of this study was to identify and explain the underlying process of exacerbation-related self-management behavior.Methods: A qualitative study using semi-structured in-depth interviews was performed according to the grounded theory approach, following a cyclic process in which data collection and data analysis alternated. Fifteen patients (male n=8; age range 59–88 years) with mild to very severe COPD were recruited from primary and secondary care settings in the Netherlands, in 2015.Results: Several patterns in exacerbation-related self-management behavior were identified, and a conceptual model describing factors influencing exacerbation-related self-management was developed. Acceptance, knowledge, experiences with exacerbations, perceived severity of symptoms and social support were important factors influencing exacerbation-related self-management. Specific factors influencing recognition of exacerbations were heterogeneity of exacerbations and habituation to symptoms. Feelings of fear, perceived influence on exacerbation course, patient beliefs, ambivalence toward treatment, trust in health care providers and self-empowerment were identified as specific factors influencing self-management actions.Conclusion: This study provided insight into factors influencing exacerbation-related self-management behavior in COPD patients. The conceptual model can be used as a framework for health care professionals providing self-management support. In the development of future self-management interventions, factors influencing the process of exacerbation-related self-management should be taken into account. Keywords: COPD, self-management, exacerbation, qualitative research, grounded theory

Background: There is an emergence of mobile health (mHealth) interventions to support self-management in patients with chronic obstructive pulmonary disease (COPD). Recently, an evidence-driven mHealth intervention has been developed to support patients with COPD in exacerbation-related self-management: the Copilot app. Health care providers (HCPs) are important stakeholders as they are the ones who have to provide the app to patients, personalize the app, and review the app. It is, therefore, important to investigate at an early stage whether the app is feasible in the daily practice of the HCPs., Objective: The aim of this study is to evaluate the perceived feasibility of the Copilot app in the daily practice of HCPs., Methods: A multimethods design was used to investigate how HCPs experience working with the app and how they perceive the feasibility of the app in their daily practice. The feasibility areas described by Bowen et al were used for guidance. HCPs were observed while performing tasks in the app and asked to think aloud. The System Usability Scale was used to investigate the usability of the app, and semistructured interviews were conducted to explore the feasibility of the app. The study was conducted in primary, secondary, and tertiary care settings in the Netherlands from February 2019 to September 2019., Results: In total, 14 HCPs participated in this study-8 nurses, 5 physicians, and 1 physician assistant. The HCPs found the app acceptable to use. The expected key benefits of the app were an increased insight into patient symptoms, more structured patient conversations, and more tailored self-management support. The app especially fits within the available time and workflow of nurses. The use of the app will be influenced by the autonomy of the professional, the focus of the organization on eHealth, costs associated with the app, and compatibility with the current systems used. Most HCPs expressed that there are conditions that must be met to be able to use the app. The app can be integrated into the existing care paths of primary, secondary, and tertiary health care settings. Individual organizational factors must be taken into account when integrating the app into daily practice., Conclusions: This early-stage feasibility study shows that the Copilot app is feasible to use in the daily practice of HCPs and can be integrated into primary, secondary, and tertiary health care settings in the Netherlands. The app was considered to best fit the role of the nurses. The app will be less feasible for those organizations in which many conditions need to be met to use the app. This study provides a new approach to evaluate the perceived feasibility of mHealth interventions at an early stage and provides valuable insights for further feasibility testing., (©Yvonne JG Korpershoek, Tjitske Holtrop, Sigrid CJM Vervoort, Lisette Schoonhoven, Marieke J Schuurmans, Jaap CA Trappenburg. Originally published in JMIR Formative Research (http://formative.jmir.org), 19.11.2020.)

Background: The Utrecht Symptom Diary (USD) is a Dutch and adapted version of the Edmonton Symptom Assessment System, a patient-reported outcome measurement (PROM) tool to asses and monitor symptoms in cancer patients. This study analyses the validity and responsiveness of the USD and the cutoff points to determine the clinical significance of a symptom score., Methods: Observational longitudinal cohort study including adult in- and outpatients treated in an academic hospital in the Netherlands who completed at least one USD as part of routine care (2012-2019). The distress thermometer and problem checklist (DT&PC) was used as a reference PROM. Content, construct and criterion validity, responsiveness, and cutoff points are shown with prevalences, area under receiver operating characteristic (ROC) curve, Chi-squared test, Wilcoxon signed-rank test, and positive and negative predictive values, respectively., Results: A total of 3913 patients completed 22 400 USDs. Content validity was confirmed for all added USD items with prevalences of ≥22%. All USD items also present on the DT&PC demonstrated a good criterion validity (ROC >0.8). Construct validity was confirmed for the USD as a whole and for the items dry mouth, dysphagia and well-being (P < .0001). USD scores differed significantly for patients when improving or deteriorating on the DT&PC which confirmed responsiveness. Optimal cutoff points (3 or 4) differed per symptom., Conclusion: The USD is a valid 12-item PROM for the most prevalent symptoms in cancer patients, which has content, criterion, and construct validity, and detects clinically important changes over time, in both curative and palliative phase., (© 2020 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)

Objective: The rapid scale up of antiretroviral treatment (ART) in sub-Saharan Africa (SSA) has resulted in an increased focus on patient adherence. Non-adherence can lead to drug-resistant HIV caused by failure to achieve maximal viral suppression. Optimal treatment requires the identification of patients at high risk of suboptimal adherence and targeted interventions. The aim of this review was to identify and summarise determinants of adherence to ART among HIV-positive adults., Design: Systematic review of adherence to ART in SSA from January 2002 to October 2014., Methods: A systematic search was performed in 6 databases (PubMed, Cochrane Library, EMBASE, Web of Science, Popline, Global Health Library) for qualitative and quantitative articles. Risk of bias was assessed. A meta-analysis was conducted for pooled estimates of effect size on adherence determinants., Results: Of the 4052 articles screened, 146 were included for final analysis, reporting on determinants of 161 922 HIV patients with an average adherence score of 72.9%. Main determinants of non-adherence were use of alcohol, male gender, use of traditional/herbal medicine, dissatisfaction with healthcare facility and healthcare workers, depression, discrimination and stigmatisation, and poor social support. Promoters of adherence included counselling and education interventions, memory aids, and active disclosure among people living with HIV. Determinants of health status had conflicting influence on adherence., Conclusions: The sociodemographic, psychosocial, health status, treatment-related and intervention-related determinants are interlinked and contribute to optimal adherence. Clinics providing ART in SSA should therefore design targeted interventions addressing these determinants to optimise health outcomes., Competing Interests: Competing interests: None declared.

Objective: Patient education is an important intervention to prevent an adrenal crisis in patients with adrenal insufficiency. The objective of this study was to assess the knowledge of adjusting the dose of glucocorticoids in special circumstances in patients with adrenal insufficiency who had previously been educated on this topic. In patients with insufficient knowledge, we tried to identify the underlying causes and care needs., Design: Quantitative and qualitative study., Methods: Adult patients with chronic primary and secondary adrenal insufficiency who received glucocorticoid stress management education were invited to participate in a telephone interview in which we tested their knowledge using hypothetical situations of physical and mental stress. In respondents with insufficient knowledge, we conducted a qualitative semistructured interview to elicit the underlying reasons from patients' perspective for their lack of knowledge and determine their care needs., Results: Forty-three of the 83 patients who previously received education had insufficient knowledge about how to act during stressful situations. We found a significant association between education level and level of knowledge after the educational consult. The following underlying factors were identified: unawareness of the seriousness of their condition, ineffective coping strategies, the lack of experience with self-management skills and misconceptions. The most important care needs were repetition of education, the use of guidelines, learning from experience and optimizing social support., Conclusion: One or two educational consults are not effective to achieve adequate self-management skills. There is a need for structural follow-up where education is repeated and practical implementation of this knowledge is tested in order to identify the potential inadequate action., (© 2016 John Wiley & Sons Ltd.)

Background: The costs of combination antiretroviral therapy (cART) for HIV, consisting of separate, particularly generic, components (multiple-tablet regimens, MTR) are generally much lower than those of single-tablet regimens (STR) comprising the same active ingredients., Objectives: To assess whether patients would be willing to take MTR, once-daily, instead of STR, with the goal of reducing general healthcare costs. In addition, we aimed to examine whether willingness was associated with particular patient characteristics., Methods: Data from the ATHENA cohort database in The Netherlands of adult HIV-1-infected patients in care and taking cART ≥6 months were used to select 1000 potential participants for an online patient survey on patient preferences and satisfaction. Participants were asked whether they would be willing to take three pills with the equivalent active ingredients simultaneously instead of STR to reduce costs. Multivariate logistic regression was used to examine associations between patient characteristics and willingness to take MTR instead of STR., Results: Forty-seven percent ( n  = 152) of the 322 respondents answered 'yes' and 26 % ( n  = 83) answered 'maybe' when asked whether they would be willing to take three pills with the equivalent active ingredients simultaneously to reduce costs. Non-Dutch patients were significantly more likely to answer 'no' (OR: 2.49; 95 % CI: 1.17-5.30) or 'maybe' (OR: 2.63; 95 % CI: 1.24-5.60). Answering 'no' was less common among patients who had been taking cART ≥15 years (OR: 0.23; 95 % CI: 0.09-0.58). Commonly reported concerns included the dosing frequency, efficacy and tolerability of MTR., Conclusions: HIV-infected patients do not necessarily oppose the decision to prescribe MTR instead of STR to reduce healthcare costs. However, the potential trade-off in terms of convenience should be carefully weighed against the projected savings., Competing Interests: Compliance with Ethical StandardsEthical ApprovalThis study was exempted from written informed consent (by the Medical Ethics Review Committee of the Academic Medical Centre of the University of Amsterdam). All patients were informed about the study and we considered consent implicit when a survey was returned to us. Patients who had opted out of registration in the ATHENA cohort were not included.Conflict of interestSCJMV has received travel grants from Abbvie and Gilead. PJS through his institution has received grants from (the former) Abbott Laboratories and Gilead Sciences. PR through his institution has received independent scientific grant support from Gilead Sciences, Janssen Pharmaceuticals Inc, Merck & Co, Bristol-Myers Squibb and ViiV Healthcare; he has served on a scientific advisory board for Gilead Sciences; he serves on a data safety monitoring committee for Janssen Pharmaceuticals Inc; and chaired a scientific symposium by ViiV Healthcare, for which his institution has received remuneration. KB serves on advisory boards for MSD, Gilead, BMS, Viiv and Janssen, for which he has received remuneration. The authors EANE, CS, PTN, FPK and SEG declare that they have no conflicts of interest.FundingThis research was supported by Aids Fonds (grant number: 2011015). The ATHENA database is maintained by Stichting HIV Monitoring and supported by a grant from the Dutch Ministry of Health, Welfare, and Sport through the Centre for Infectious Disease Control of the National Institute for Public Health and the Environment.Coordinating CentreDirector: P. Reiss. Data analysis: D.O. Bezemer, A.I. van Sighem, C. Smit, F.W.M.N. Wit, T.S. Boender. Data management and quality control: S. Zaheri, M. Hillebregt, A. de Jong. Data monitoring: D. Bergsma, P. Hoekstra, A. de Lang, S. Grivell, A. Jansen, M.J. Rademaker, M. Raethke, R. Meijering, S. Schnörr. Data collection: L. de Groot, M. van den Akker, Y. Bakker, E. Claessen, A. El Berkaoui, J. Koops, E. Kruijne, C. Lodewijk, L. Munjishvili, B. Peeck, C. Ree, R. Regtop, Y. Ruijs, T. Rutkens, L. van de Sande, M. Schoorl, A. Timmerman, E. Tuijn, L. Veenenberg, S. van der Vliet, A. Wisse, T. Woudstra. Patient registration: B. Tuk.

Background: Preserving kidney function and prevention of cardiovascular disease can only be achieved if patients are supported in self-managing their disease aimed at developing coping strategies., Objectives: In MASTERPLAN, a clinical trial from 2005 -2010, patients with chronic kidney disease were randomised to receive nurse practitioner (NP) support or physician care alone. We evaluated the role of NP and patients in achieving lifestyle treatment goals. However the evaluation of lifestyle interventions resulted in disappointing findings., Design: We conducted a mixed method study to explain the previous quantitative results in order to achieve a more complete description of the practice of reaching lifestyle goals., Participants: Ten NPs in nine participating hospitals of the MASTERPLAN study were interviewed and identified a hierarchy on what treatment goals received the most attention during MASTERPLAN, at baseline and after four years., Results: A shift of attention in study goals occured for various reasons e.g. progression of disease, too many goals, non-motivated patients, changed relationship between NP and patient. Different strategies were used to influence lifestyle change with varying degrees of success., Conclusion: Lifestyle change is difficult to maintain during five years follow up. Besides a shift of attention in study goals, the relationship with the patient also changed over time., (© 2015 European Dialysis and Transplant Nurses Association/European Renal Care Association.)

Since the introduction of cART (combination antiretroviral therapy), HIV has evolved into a chronic disease such that it requires lifelong medical treatment to which patients must adhere. Communication with health care providers is pivotal in supporting patients to adapt to having HIV and adhering to treatment, in order to maintain health and quality of life. Previous research indicates that communication is optimal when it matches patient preferences for information exchange, relationship establishment, and involvement in treatment decisions. The aim of the present study is to explore HIV patient communication preferences as well as patient experiences with their providers (not) matching their preferences. A second aim is to explore provider beliefs about patient preferences and provider views on optimal communication. Data were collected through interviews with 28 patients and 11 providers from two academic hospitals. Results indicate that patient preferences reflect their cognitive, emotional, and practical needs such that patients look to increase their sense of control over their HIV. Patients aim to further increase their sense of control (by proxy) through their relationship with their providers and through their decisional involvement preferences. Providers are well aware of patient communication preferences but do not explicate underlying control needs. Implications for clinical practice are discussed.

Background: In postoperative pain treatment patients are asked to rate their pain experience on a single uni-dimensional pain scale. Such pain scores are also used as indicator to assess the quality of pain treatment. However, patients may differ in how they interpret the Numeric Rating Scale (NRS) score., Objectives: This study examines how patients assign a number to their currently experienced postoperative pain and which considerations influence this process., Methods: A qualitative approach according to grounded theory was used. Twenty-seven patients were interviewed one day after surgery., Results: Three main themes emerged that influenced the Numeric Rating Scale scores (0-10) that patients actually reported to professionals: score-related factors, intrapersonal factors, and the anticipated consequences of a given pain score. Anticipated consequences were analgesic administration-which could be desired or undesired-and possible judgements by professionals. We also propose a conceptual model for the relationship between factors that influence the pain rating process. Based on patients' score-related and intrapersonal factors, a preliminary pain score was "internally" set. Before reporting the pain score to the healthcare professional, patients considered the anticipated consequences (i.e., expected judgements by professionals and anticipation of analgesic administration) of current Numeric Rating Scale scores., Conclusions: This study provides insight into the process of how patients translate their current postoperative pain into a numeric rating score. The proposed model may help professionals to understand the factors that influence a given Numeric Rating Scale score and suggest the most appropriate questions for clarification. In this way, patients and professionals may arrive at a shared understanding of the pain score, resulting in a tailored decision regarding the most appropriate treatment of current postoperative pain, particularly the dosing and timing of opioid administration., (Copyright © 2015 Elsevier Ltd. All rights reserved.)

Background: Adherence to combination antiretroviral therapy (ART) is a key predictor of the success of human immunodeficiency virus (HIV) treatment, and is potentially amenable to intervention. Insight into predictors or correlates of non-adherence to ART may help guide targets for the development of adherence-enhancing interventions. Our objective was to review evidence on predictors/correlates of adherence to ART, and to aggregate findings into quantitative estimates of their impact on adherence., Methods: We searched PubMed for original English-language papers, published between 1996 and June 2014, and the reference lists of all relevant articles found. Studies reporting on predictors/correlates of adherence of adults prescribed ART for chronic HIV infection were included without restriction to adherence assessment method, study design or geographical location. Two researchers independently extracted the data from the same papers. Random effects models with inverse variance weights were used to aggregate findings into pooled effects estimates with 95% confidence intervals. The standardized mean difference (SMD) was used as the common effect size. The impact of study design features (adherence assessment method, study design, and the United Nations Human Development Index (HDI) of the country in which the study was set) was investigated using categorical mixed effects meta-regression., Results: In total, 207 studies were included. The following predictors/correlates were most strongly associated with adherence: adherence self-efficacy (SMD = 0.603, P = 0.001), current substance use (SMD = -0.395, P = 0.001), concerns about ART (SMD = -0.388, P = 0.001), beliefs about the necessity/utility of ART (SMD = 0.357, P = 0.001), trust/satisfaction with the HIV care provider (SMD = 0.377, P = 0.001), depressive symptoms (SMD = -0.305, P = 0.001), stigma about HIV (SMD = -0.282, P = 0.001), and social support (SMD = 0.237, P = 0.001). Smaller but significant associations were observed for the following being prescribed a protease inhibitor-containing regimen (SMD = -0.196, P = 0.001), daily dosing frequency (SMD = -0.193, P = 0.001), financial constraints (SMD -0.187, P = 0.001) and pill burden (SMD = -0.124, P = 0.001). Higher trust/satisfaction with the HIV care provider, a lower daily dosing frequency, and fewer depressive symptoms were more strongly related with higher adherence in low and medium HDI countries than in high HDI countries., Conclusions: These findings suggest that adherence-enhancing interventions should particularly target psychological factors such as self-efficacy and concerns/beliefs about the efficacy and safety of ART. Moreover, these findings suggest that simplification of regimens might have smaller but significant effects.

This study describes strategies used by Dutch HIV nurse consultants to promote adherence to antiretroviral therapy (ART) and the assumptions on which these strategies were based. The study used a descriptive qualitative design with individual and focus group interviews. Individual semi-structured interviews (n = 23) focusing on adherence-supporting procedures and case-based focus groups (3 groups with 5-7 participants each) focusing on adherence strategies were held with HIV nurse consultants (n = 19). The strategies described were mainly based on experience. Theoretical principles were rarely discussed and participants seldom referred to the literature. Adherence-promoting strategies were identified for two phases: (a) before beginning ART and (b) during follow-up care while on ART. Strategies that were not used in one specific phase were categorized under "all phases." Data yielded useful ideas for the care of HIV-infected patients, and findings can be applied to the development and use of adherence-promoting strategies., (Copyright © 2010 Association of Nurses in AIDS Care. Published by Elsevier Inc. All rights reserved.)

In order to explore and clarify the underlying processes which lead to (non)-adherence behavior in patients treated with highly active antiretroviral therapy (HAART), a qualitative study was conducted. Thirty-seven in-depth interviews were held with 30 Caucasian HIV-positive patients. Additional data were collected by diaries kept by some participants. The analysis took place in a cyclic process; selection of themes was alternated with input of new material. Adherence to HAART is mainly influenced by the experience of being HIV positive. Acceptance or non-acceptance of HIV leads to one of two basic stances toward adherence: "being determined to be adherent" or "medication is subordinate to other priorities in life". This stance determines the commitment to therapy and influences how patients cope with adherence. Patients who are determined to be adherent find solutions to adherence problems. Patients who are not determined to be adherent solve problems only if the solution does not compromise important aspects of their lives. Insight is provided into the manner in which prevalent themes; "start of HAART", "attitude toward medication", "HAART in daily life", "contextual factors", "health and HAART" and "being informed", influence adherence behavior. Before starting HAART the focus should be on helping the patient to accept HIV as a part of life. The findings need to be taken into account in adherence-promoting interventions.

Objective: To compare early and late responses to highly active antiretroviral therapy (HAART) in European and non-European HIV-1 infected patients in a Dutch cohort., Methods: We retrospectively analysed the response to HAART of 216 previously treatment-naive HIV-1-infected patients using the University Medical Centre Utrecht HIV database. African (n=51), Asian (n=7), and Central/South American (n=6) patients were classified as non-European, and others as European (n=152). Early failure was defined as a viral load that remained above 400 HIV-1 RNA copies/mL after 6 months of treatment with HAART. Late-phase failure was determined in patients who were successfully treated in the early phase and was defined as two consecutive viral load measurements above 400 copies/mL, a new AIDS-defining event or death., Results: In the early phase, four of 152 (2.6%) European and eight of 64 (12.5%) non-European patients failed HAART. A significant increased risk of virological failure in the early phase of treatment was observed for non-Europeans as compared to Europeans (odds ratio 4.6; 95% confidence interval 1.1-20.2). Low serum drug levels in the absence of resistant virus were often seen at the time of early failure. No difference in late-phase failure was observed between the two groups (adjusted hazard ratio 0.6; 95% confidence interval 0.3-1.2)., Conclusions: Non-European patients had a 4.6 times higher risk of virological failure than their European counterparts in the first 6 months of treatment with HAART. This failure seemed to be associated with low serum drug levels at the time of failure. However, if HAART was successful in the early phase, response rates in the late phase were similar for Europeans and non-Europeans.