115 research outputs found
Medication and symptom management in persons living with HIV. perceptions and collaboration of persons living with HIV, their close support persons and healthcare providers
No full textOver the past two decades, developments in the treatment and monitoring of HIV Infection have
radically reduced morbidity and mortality rates among those affected by it [1]. Between 1996 and
2005, the estimated life expectancy for persons living with HIV (PLWH) placed on combined
antiretroviral therapy (cART) at age 20 rose from 36.1 to 49.4 years [2].
Focusing on the improvement of health outcomes for the estimated 33 million PLWH worldwide, the
situation differs considerably between low- and high-resource settings. Broader access to cART
should substantially improve health outcomes for PLWH in low-resource settings, where supplies
currently meet only 31% of the estimated global need [3]. However, such steep improvements are no
longer a realistic option for high-resource settings. In western and central Europe, for example, longterm
treatment is already provided to 90 -100% of PLWH and initial drops in mortality and morbidity
have been sustained [4].
In high resource settings, though, long-term treatment experiences have shown that non-adherence to
medication regimens is a serious issue. Since ART demands a constant level of medication to suppress
viral replication, once started it has to continue without interruption. Compelling evidence has linked
treatment interruptions, including medically guided ones, with poorer clinical outcomes compared to
continuous treatment, i.e., near-perfect adherence [5].
However, long term adherence is complicated by a range of barriers, including the medications’
adverse effects: estimates of prescribed cART doses actually taken in Europe and Northern America
range from 60%-70% [5-8]. As a result, medications’ adverse effects, opportunistic infections and comorbidities
keep the prevalence of symptoms consistently high, averaging 8-14 symptoms per person
[9-12]; and a high number of distressing symptoms has been shown to further complicate adherence to
cART [9].
Regarding the stabilization of health outcomes for this treatment-experienced population of PLWH,
major advances are no longer possible based solely on treatment access. It is clearly necessary to
formulate new management strategies that consider multiple aspects of this chronic condition,
focusing in particular on the skills needed by PLWH and their close support persons (CSPs) to manage
their condition at home on a daily basis.
In order to improve health outcomes for patients with chronic conditions, various studies have shown a
need for profound changes across diverse levels of the health care system [9, 13, 14]. The WHO
publication ‘Innovative Care for Chronic Conditions’ structures chronic care management areas
requiring change into micro, meso, and macro levels, with each level interacting with and dynamically
influencing the others. The macro level consists of policy makers who influence standards and
incentives for quality care; the meso level includes healthcare organizations and communities; and the
micro level is the level of patient interaction, where patients’ self management and collaboration between health care providers and patients are key issues [15]. By providing a fuller understanding of
PLWH’s self-management and collaboration with CSPs and health care providers (HCPs) within the
care process, the research represented here should help answer questions of how and where to improve
care for PLWH on the micro (patient) level.
In the context of chronic disease management, “self-management” has become a widely used
term, encompassing the day-to-day activities a chronic illness patient performs to minimize the
consequences of his or her condition. Such actions vary based on the person’s perceptions, experiences
and expertise, but share the focus of optimizing health outcomes, whether by retarding deterioration,
maintaining a given level of health, or improving overall wellness [16-18]. Additionally selfmanagement
is increasingly recognized as a dynamic process that includes active collaboration with
others, especially close support persons (e.g., partners, friends, family) and healthcare providers [18,
19]. Yet the skills that enable healthcare providers and close support persons to work with PLWH’s
self-management have only been vaguely described.
Although patient self-management shows similarities across a range of chronic conditions,
every condition has unique challenges that require specialized self-management tasks. HIV specific
self-management tasks have been summarized into eight categories: medication management,
symptom management, substance use management, lifestyle management, emotional management,
role management, transmission management, and social management. From a medical perspective
with a focus on improving health outcomes, medication and symptom management may be regarded
as the core tasks of HIV self-management. After all, a person’s experience of symptoms is closely
related to adherence to cART (i.e., adherence decisions are often based upon symptoms), and
adherence is closely related to treatment success [9, 20, 21].
In the current literature, medication management and symptom management – the two selfmanagement
tasks upon which this thesis focuses – have mainly been described in a fragmented way,
with close attention paid only to one or the other, despite considerable evidence linking the two
closely [9, 21-23].
Medication management encompasses decisions related to initiating or changing cART regimens [24-
26]. Once started, the new or changed regimens have to be integrated into daily life and adherence
maintained over time. Eventually, this also entails the management of adherence related obstacles [6,
27]. Opportunistic diseases and/or co-morbidities often require further medication management.
Symptom management encompasses the assessment, evaluation and monitoring of symptoms [21].
Decisions are necessary on how to deal with symptoms, such as when to contact healthcare providers,
whether or not to alter exercise or diet, and when to take — or not take — certain medications [28].
For PLWH, the formulation and adoption of many medication and symptom management strategies
involves collaboration with their HCPs and CSPs; yet, despite the seemingly obvious benefits of such
collaboration, the related processes are only vaguely understood. Since self-management activities regarding both medications and symptoms are closely associated with health outcomes, a fuller
understanding of such activities is necessary to improve related services.
The overall aim of this exploratory mixed method research program was to describe PLWH’s
symptom and medication management activities, focusing on collaboration between PLWH, CSPs and
HCPs, from the perspectives of all three groups. Four articles presented the results.
The first, a clinical case report, describes the complexity of self-management support in clinical care
and illustrates how interventions that were individualized, culturally sensitive, and provided by a team
of health care providers enabled the patient to optimize his adherence, which led to significant
improvement in his clinical surrogate markers and subjective quality of life.
Second, a literature review summarized the evidence resulting from randomised controlled trials of
interventions designed to enhance medication adherence to antiretroviral therapy. The review showed
that effective programs combine several methods, and highlighted a continuing need for long term
programs tailored to patient needs.
The third article dealt with PLWH’s experiences with the management of medications and symptoms, along with their collaborations with close support persons and health care providers within
this process. The narratives of 13 PLWH revealed that even small changes in health and treatment
could change participants’ impressions of maintaining or “losing their grip” on HIV. To keep their
grip, participants constantly monitored their condition, developed expertise in care and symptom
management, and included input from healthcare providers and close support persons in their
management processes. Despite the clear need for partnerships with HCP, PLWH described this area
of collaboration as sometimes supportive, sometimes a hindrance.
The final article reported on the use of an exploratory mixed methods approach to examine the
collaboration of PLWH and their CSP within the process of symptom management, including a
comparison of the two players symptom reports. Qualitative results revealed that collaboration
typically depended on distinct but integrative positions of PLWH and CSP, with the PLWH in a clear
leadership role.
These roles were reflected in diverse themes of daily symptom management, and later confirmed in
the quantitatively assessed symptom experience reports, where PLWH reported significantly more
symptoms over the previous week – an average of 16 (Q1=9; Q3=24), compared to CSPs’ 12 (Q1=5;
Q3=17). This disproved two of our initial hypotheses – first, that certain symptoms would be reported
more often by CSPs (this was never the case), and second, that where the PLWH reported symptoms as very distressing, symptom reports by PLWH and CSP would not differ.
The results of this research program contributed to the existing knowledge by using the
conceptualization of Loring and Holman to describe HIV specific self-management tasks and skills [17]. This comprehensive description can be used as a guiding framework to plan both clinical selfmanagement
support interventions and HIV self-management oriented research projects.
Another important contribution was the replication of the observation by Thorne et al. that chronically
ill patients at some point made an active decision to control the effects of their condition [18]. The
constitutive pattern “I have a grip on HIV - HIV has a grip on me” revealed a similar phenomenon.
However, in contrast to earlier investigations, examining this phenomenon provided insights into a
dynamic process. Throughout the course of the condition, health and/or treatment changes could
influence the perception of “having a grip on HIV” or losing it. These alternating conditions could
constitute a phenomenon more pregnant in HIV than in chronic conditions with more predictable
illness trajectories. Additionally, since the “HIV has a grip on me” perception was associated with
feelings of uncertainty, fear and loss of morale, and since depressive symptoms clearly hinder
effective self-management, this phenomenon certainly warrants clinical examination [28-30].
A particularly important outcome of this research program is the deepening of our understanding of
collaboration between PLWH and CSP. Concordant with earlier reports, the narratives of PLWH and
CSP presented in Chapter Six revealed that PLWH collaborated closely with their CSPs to manage
their condition [31-33]. Yet, in contrast to earlier investigations, this collaboration was characterized
by distinct roles: as ‘managers’, the PLWH took a clear lead on the overall management of the
condition, whereas, as ‘companions’, their CSPs tried to find and support aspects of self-management.
The PLWH’s leadership role was, in fact, much clearer here than in previous studies, which
emphasized the partnership aspects of the PLWH/CSP relationship. This insight into the collaboration
of PLWH and CSP may provide a foundation upon which to integrate CSP into research based clinical interventions.
To our knowledge, concordance between the symptom reports of patients and their CSPs has never
before been described for the PLWH population. We therefore provide the first recorded insights into
the issue. Compared to earlier investigations in cancer populations, where CSPs reported more
symptoms than patients [34, 35], PLWH in this study consistently reported significantly more.
Additionally, we described an inter-method inconsistency that indicates a need to better understand
management of neurocognitive symptoms from PLWH’s and CSP’s perspectives. Our qualitative
analysis revealed a cluster of neurocognitive symptoms that CSPs recognized but did not wish to
discuss with their partners; and the quantitative assessment of concordance between symptom reports
revealed that all symptoms were reported more often by the PLWH.
Regarding collaborations with HCPs, in accord with previous research, our results illustrated that this
group can both hinder and enable PLWH’s self-management [36-38]. PLWH’s narratives provided
insights into the respective negative and positive aspects of their relationships with HCPs. On one
hand, the need for providers to use a patient centered approach, including recognizing each person as a
unique human being, is highlighted and has already proved important in a broad range of studies [36,38-40]. On the other hand, our findings also highlight the importance of HIV-specific competence on
the part of healthcare providers. Second in importance to overall medical competence, this includes the
ability to assess a patient’s symptom experience in a non-judgmental manner, to collaboratively
develop medication and symptom management strategies, to provide ongoing education on those
topics, and finally to assist patients in decision making and in the coordination of their various health
problems.
Also significantly, this research program determined that CSP were only very slightly integrated into
clinical care, meaning their collaboration with health care providers was marginal. Since PLWH need
their CSPs to act as active partners to manage the disease, not integrating them into self-management
support is a missed opportunity to strengthen PLWH’s self-management.
In summary, this study program provided new insights and raised further questions. Subsequent
research should focus on a qualitative meta-synthesis and development of the phenomenon of “having
a grip” or “being in control” of a chronic condition, descriptions of HCPs’ perspectives of
collaboration, a better understanding of the concordance between PLWH’s symptom reports and those
of CSP – particularly in relation to neurocognitive symptoms and regarding strategies for integrating
CSP’s into intervention programs and clinical processes
Self-Assessment Tool to Promote Organizational Health Literacy in Primary Care Settings in Switzerland
No full textDe Gani SM, Nowak-Fluck D, Nicca D, Vogt D. Self-Assessment Tool to Promote Organizational Health Literacy in Primary Care Settings in Switzerland. International Journal of Environmental Research and Public Health. 2020;17(24): 9497.Dealing with health information and taking care of one's own health are key aspects of health literacy and a difficulty for nearly half of the population in Europe. Limited health literacy often results in poorer health outcomes. Health literacy is a fundamental health determinant, and its improvement provides great potential for addressing public health challenges. Health care organizations play an important role in improving population's health literacy. Health literate health care organizations facilitate access, understanding and use of health information and decrease the demands and complexities of the health care system. Few efforts have been taken so far to promote organizational health literacy, especially in German-speaking countries. This project aimed at developing a self-assessment tool, which enables primary care organizations to assess and improve their level of health literacy. The self-assessment tool was developed and evaluated with general practitioners and community care organizations in Switzerland. Here the participative development process, outcomes and the three modules of the self-assessment tool are presented: (1) manual with detailed introduction and instruction, (2) checklist for self-assessment of organizational health literacy and (3) handbook with measures for improvement. The aim of this tool is that organizations are able to identify the need for action, plan and implement improvement measures
Perceived HIV symptom manageability: synthesis of a new use for a known concept
No full textTo report the synthesis of the concept of perceived symptom manageability.; Common symptom assessment parameters fail to address concerns about the impact of symptoms on everyday life, overall functioning, or threats to individuals living with the human immunodeficiency virus. We claim that the concept of 'perceived symptom manageability' integrates these important dimensions of the patients' experience of their symptoms.; Online databases, thesauri, and dictionaries were accessed in January 2012. A free search was performed scanning the PubMed, CINAHL, and PsycINFO databases for entries from 2001-2011 using 'manageability' in the title or abstract as a search term.; Text-based analysis.; We followed the steps delineated by Walker and Avant for concept synthesis. Uses of the concept 'manageability' were identified and listed, meaningful usage clusters were generated, and a preliminary working definition was created.; Social resources and individual interpretation were relevant in view of managing a difficult situation, thus positioning 'manageability' in a social and interpretational context that exceeded objective control. We preliminarily defined perceived symptom manageability as 'the extent of the perceived ability to bring social and personal resources into play to successfully deal with or control symptoms, despite difficulties'.; We believe that our working definition represents a promising start to understand and address the manageability problems that individual patients face regarding particular symptoms and may serve as a basis to identify not only symptoms but also areas of intervention that are of most concern to individual patients
Erfahrungen von Advanced Practice Nurses mit einem klinischen Weiterbildungsstudiengang im Kontext ihrer beruflichen Entwicklung
No full textDas an der Universität Basel seit 2012 angebotene Diploma of Advanced Studies in Advanced Nursing Practice (DAS ANP-plus) ist ein klinischer Weiterbildungsstudiengang für die noch wenig etablierte Berufsgruppe der Advanced Practice Nurse (APN). In der Berufsbiografie und für die Tätigkeit der APN in der Patientenversorgung spielt der Erwerb klinischer Kompetenzen eine zentrale Rolle. Ziel: Mit der qualitativen Studie wurde exploriert, welche Erfahrungen APNs während und nach einer klinisch ausgerichteten postgradualen Weiterbildung in der Schweiz machten und welche bedeutenden Veränderungen sie dadurch in ihrer Berufsausübung erlebten. Methode: Reflexive thematische Analyse mit konstruktivistischer Orientierung. 14 Absolvent_innen wurden leitfadengestützt unter Einbezug der Berufsbiografie interviewt. Ergebnisse: „Die Vision verfolgen besser pflegen zu wollen“ ist das konstituierende Thema. Die Absolvent_innen scheinen von einer starken Vision getragen zu werden: vom Streben mehr wissen zu wollen, hin zur Umsetzung der Vorstellung ihrer Rolle bis zu innovativen Veränderungen in der Gesundheitsversorgung. Die Vision zu verfolgen ist durch drei Themen geprägt: „Die Herausforderungen als APN Fuß zu fassen“, vor dem Studiengang, „Sicherheit erlangen durch die Stärkung klinischer Kompetenzen“ während dem Studiengang und längerfristig „mit Verbündeten neue Wege in Versorgungssystemen gehen“. Schlussfolgerungen: Durch das DAS ANP-plus werden die klinischen Kompetenzen von APNs gestärkt, dabei nimmt die Supervision in klinischen Alltag eine bedeutende Stellung ein
MANagement Of patients with Systemic Sclerosis (MANOSS project): A mixed methods study of chronic illness management practice patterns and the development of a new model of care
No full textSystemic sclerosis (SSc) is a rare multisystemic autoimmune connective‐tissue disease characterized by a chronic and frequently progressive disease course. Approximately 20 in 100’000 adults are affected.[1, 2] Variability in disease severity, progression, and organ involvement challenge timely diagnosis and effective disease management, contributing to high mortality.[1, 3] Approximately 75% of patients develop organ involvement within the first five years of diagnosis, with early manifestations including skin fibrosis (75%), gastrointestinal symptoms (71%), lung involvement (65%), digital ulcers (34%) and cardiac involvement (32%).[3]
For patients with rapidly progressive dcSSc and a high risk of organ failure in an early disease stage the only treatment known to modify the overall disease course is autologous haematopoietic stem cell transplantation (HSCT).[4, 5] However, HSCT therapy's high mortality rates and association with secondary autoimmune diseases make it only recommendable for patients with early rapidly progressive SSc, yet without severe organ involvement.[5] In most cases, then, medical management must be tailored to individual organ sequelae and disease progression, i.e., regular multidisciplinary consultations to identify organ involvement early as well as pharmacological and non-pharmacological interventions to decrease/slow disease progression and reduce organ damage.[4]
At the same time, therapeutic interventions need to focus on improving the SSc population's health-related quality of life (HRQoL).[6] Over the disease's trajectory, patients experience numerous physical and psychosocial problems, including fatigue, hand stiffness, Raynaud’s phenomenon, digital ulcers, shortness of breath, pain, gastrointestinal symptoms, work disability, depression, anxiety (e.g., regarding disease progression), and dissatisfaction with body image.[6-10] Numerous studies report severely impaired physical and psychological HRQoL in SSc.[10-13]
Rare disease patients' disease pathways are often complex, calling for large numbers of healthcare professionals (HPs), all of whom need to collaborate and coordinate their efforts to deliver safe, effective high-quality care.[14, 15] Compared to groups with more frequent chronic diseases, SSc patients are less likely to receive timely, person-centred care tailored to their individual health problems and psychosocial concerns. And as most interventions for patients with rare diseases are only available at specialized treatment centres, distance from a centre can act as a further barrier.[14, 16]
To ease the strain SSc patients face to receive high-quality treatment, it will be necessary to optimize and reshape the current SSc management system. To guide this process, we will use the eHealth-enhanced chronic care model (eCCM), a longstanding and widely adopted development model that includes eHealth approaches to guide chronic illness management.[17-19] Its central aim is to improve health outcomes through effective and productive interactions between prepared, proactive practice teams and informed, activated patients.
The eCCM defines and focuses on seven core elements of effective healthcare delivery: community resources, health system factors, self-management support, delivery-system design (e.g., continuity of care), decision support, clinical information systems, and eHealth education.[18] A significant body of literature has reported that in highly prevalent chronic conditions such as asthma, cardiovascular disease, depression, diabetes and osteoarthritis, incorporating eCCM elements (e.g., self-management support, clinical decision support) into care is associated with improvements in patient health outcomes, reduced health service use and reduce healthcare costs.[19-22]
Unlike with frequent chronic conditions, however, few examples describe the development and evaluation of integrated care models for rare diseases.[23-26] Similarly, participatively developed (i.e., by patients and providers together) care models for SSc with appropriate contextually adapted strategies are scarce.[27]
Therefore, for patients living with SSc in Switzerland and their families, the MANagement Of Systemic Sclerosis (MANOSS) study aims to develop a rare disease chronic care model based on a contextual analysis and stakeholder involvement. When empirical evidence is limited (as is often the case with rare disease populations), an in-depth understanding of context, practice patterns and the target audience’s needs and barriers is crucial.[28-31] Before beginning our development process, compelling arguments support the need to first describe and understand the practice patterns and needs of the target patient group (in this case, people living with SSc), as well as the perspectives of the HPs who care for them within the Swiss healthcare system.
Therefore, this dissertation’s main objective is to generate a comprehensive understanding of current chronic illness management and eHealth use in SSc. Our findings will inform the development of a chronic care model that focuses entirely on rare disease management. Preliminary steps included the adaptation and validation of specific measurement tools for the SSc population, followed by two mixed-method studies to assess chronic care and eHealth implementation in the Swiss setting in consultation with all relevant stakeholder groups.
Chapter 1 provides a general introduction to current situation regarding medical and non-pharmacological SSc management. This chapter also presents the MANOSS project's theoretical framework, including the evidence base regarding eHealth-facilitated integrated care models first for more common chronic diseases, then those specifically for rare rheumatic conditions. In addition, it summarizes selected approaches to assessing eHealth-facilitated integrated care in SSc.
Chapter 2 presents this dissertation’s rationale and specific study aims.
The study protocol presented in Chapter 3 describes the contextual analysis and development of a culturally sensitive chronic illness management model for patients with SSc and their families (i.e., the MANOSS study protocol). This includes a description of the explanatory sequential mixed method study we conducted for our contextual analysis, which was supported by broad stakeholder involvement regarding the model's development, plus a Delphi study to reach consensus. As our guiding framework, we chose the eCCM.[17, 18]
To the best of our knowledge, MANOSS is the first study to assess chronic illness management and technology readiness in a rare rheumatic disease such as SSc from the perspectives of patients, families and HPs. Concretely, this study consists of three phases, the first two of which we have completed. First, to identify SSc patients' and HPs' current chronic illness management practice patterns and technology readiness, we conducted a quantitative cross-sectional survey of patients and healthcare professionals. Second, to deepen our understanding of the care needs identified via the quantitative survey, we conducted qualitative interviews with patients (n=14), family members (n=5) and HPs (n=14). Participants of both study phases were recruited from all Swiss University hospitals (Basel, Bern, Geneva, Lausanne, Zurich), one regional (state) hospital (Lucerne), rheumatology outpatient clinics and the Swiss scleroderma patients’ association.
For the third phase, based on our analyses of the survey and interview data from the earlier phases, plus input from patients, healthcare professionals, and other experts, we will co-create a model of integrated SSc care. As a first step, to discuss and validate our quantitative and qualitative findings, we conducted three national/international focus group discussions (n=17) with individuals with several years of experience with (1) SSc as a patient or (2) family member and/or (3) professional experience in chronic care, implementation science, and/or health policy. Last (not part of this dissertation), we will incorporate the overall findings of the MANOSS project into the first draft of a logic model, which will describe how we anticipate our proposed integrated care activities and implementation strategies will lead to the desired outcomes.[32]
Chapter 4 describes our revision and validation of the German version of the 29-item Systemic Sclerosis Quality of Life Questionnaire (SScQoL). The SScQoL is a rare disease patient-reported outcome measure (PROM) validated in six languages to assess health-related quality of life (HRQoL) in SSc.[33, 34] Previous evaluation of the German version revealed problems with dichotomous responses.[33] Our study's aim was to revise the German SScQoL by extending its response structure, as well as re-evaluating its content and construct validity, reliability and unidimensionality. For example, based on our cognitive debriefing of patients (n=6) we extended dichotomous items to a 4-point response structure.[35, 36]
A total of 78 patients completed the revised SScQoL. Rasch analysis was employed to test its validity, reliability and unidimensionality.[37, 38] Initial results for the 29 items suggested the scale lacked fit with the model (=51.224, df=29, p=0.007). Grouping the items into five domains resulted in an adequate fit (=5.343, df=5, p=0.376) and unidimensionality (proportion of significant independent t-tests: 0.045, 95%CI: 0.016 to 0.114). The results indicate that, with its 4-point response structure, the revised German SScQoL is a valid and reliable measure. Further analyses suggested that the scale was well targeted, had high internal consistency (Person Separation Index, PSI=0.931) and worked consistently in patients with different demographic and clinical characteristics.
The manuscript presented in Chapter 5 reports on our explanatory sequential mixed methods analysis[39] of the current state of SSc chronic illness care from the patients' perspective, along with their HRQoL. For the first of these, our quantitative phase collected patients' (n=101) ratings of the chronic care they received across the five dimensions of the Patient Assessment of Chronic Illness Care (PACIC) scale;[40] for the second it used the SScQol.[33] The results informed the subsequent qualitative phase, which involved interviews with (n=4) individuals and one focus group (n=4).
For this phase, our main aim was to use both the interview and focus-group data to clarify the larger group's PACIC responses. The mean overall PACIC score was 3.0 out of a maximum score of 5 (95% CI: 2.8–3.2, n= 100), indicating that SSc care was ‘never’ to ‘generally not’ aligned with the CCM. Overall, the chronic care ratings were relatively poor. In fact, certain key elements of chronic care (i.e., shared decision-making and self-management support) were notably absent from several patients' SSc management.
The quantitative findings were congruent with our qualitative data: patients confirmed frequently encountering major shortcomings in care. These included experiencing organized care with limited participation, not knowing which strategies are effective or harmful and feeling left alone with disease and psychosocial consequences. They filled these gaps in care by dealing with the illness in tailored measure, taking over complex coordination of care and relying on an accessible and trustworthy team.
These findings emphasize the problem that key elements of chronic care are not yet systematically implemented in SSc care. Most notably, we identified gaps in shared decision-making, goal-setting and individual counselling—all of which are vital tools to support patient self-management skills. Furthermore, there is a lack of complex care coordination tailored to individual patient needs.
The explanatory sequential mixed methods study[39] described in Chapter 6 assessed eHealth literacy and needs regarding web-based support via internet-based information and communication technologies (ICTs). The quantitative phase included 101 patients and 47 providers; the qualitative phase collected data from focus groups including Swiss/international patients, family members and HPs (n=17). Of the patients, 89.1% used ICTs at least weekly for private communication. Patients reported relatively high comprehension of eHealth information (=6.7, 95% CI 6.2–7.3, Range 1-10), but were less confident about evaluating information reliability (=5.8, 95% CI 5.1–6.4) or finding eHealth apps (=4.8, 95% CI 4.2–5.4). Both patients and professionals reported little experience with web-based self-management support.
Regarding acceptability criteria for ICT-based SSc management support, focus groups mentioned considering non-ICT-accessible groups and fitting patients’ and professionals’ technology as crucial. In relation to understanding/appraising eHealth, participants emphasized that general SSc information is not tailored to individual disease courses. Recommendations included providing timely, understandable, and safe information and empowering end-users in ICT and health decision-making skills. While professionals expressed concerns about lacking resources (financial, human), patients placed higher values on data security and person-centredness. Key eHealth drivers included addressing end-user perceptions and putting people at the centre of technology.
This chapter's results highlight patients' and HPs' shared need for training to support their uptake of eHealth resources. Key elements include guiding patients to timely/reliable information and using eHealth tools to optimize patient-provider communication. Regarding design, responsiveness to end-users needs and consideration for individuals with limited eHealth literacy and/or ICT access both also appear to be critical for acceptability.
Chapter 7 summarizes the key findings of the previous four chapters' research, discusses them in light of the existing body of evidence and suggests implications for clinical practice and policy. This is followed first by a reflection on the strengths and limitations of our methods, then by implications for future research.
This dissertation contributes to the scientific and clinical knowledge by strengthening a comprehensive perspective on SSc care needs and key elements of chronic care that require systematic implementation in the current management of this rare disease. It identifies four target areas for system change, all of which are particularly important for the reorganization of care toward an eHealth-facilitated integrated SSc care model: shared and informed decision-making, complex care coordination, self-management and psychological support, and monitoring of integrated care programs. These areas are elaborated under the overarching need for rare disease care that is specialised, accessible and patient-centred, and thus leaves no one behind[26]. For future model and program development, these findings provide the basic materials to bridge these gaps at the clinical, delivery system, and the health system levels.
Moreover, this dissertation’s findings highlight the value of integrating patients and other stakeholders in every step of the development of a rare disease care model, beginning with a comprehensive contextual analysis. Equipped with the framework and methods used in this project, other researchers can use them to shed light on other rare disease populations' integrated care needs. As our experience has shown, the components of the eCCM are invaluable to develop both targeted programs and improved outcome measurements for eHealth-facilitated integrated care
Going HCVree: Prevention of hepatitis C reinfection in HIV-infected men who have sex with men. A mixed methods study to enable scalability of a behavioral risk reduction intervention
No full textSince the introduction of highly effective direct-acting antivirals (DAA), elimination of the hepatitis C virus (HCV) has become a realistic objective, leading the World Health Organization (WHO) to define elimination goals by 2030 [1]. Because HCV incidence and prevalence are more relevant within certain groups [2], focusing on key subpopulations for micro-elimination can be an effective strategy [3].
This requires the development of interventions tailored specifically for the target groups. In addition to screening and providing access to treatment, the overall intervention plan has to include the prevention not only of new infections but also of reinfection [3, 4].
In high-income countries, HIV-infected men who have sex with men (MSM) represent a high-impact treatment group. In recent years, members of this group have showed rap-idly increasing HCV incidence. For example, an 18-fold increase was observed between 1998 and 2011 in MSM participating in the Swiss HIV Cohort Study (SHCS) [5].
A major trigger for this HCV epidemic in HIV-infected MSM is sexual transmission. While related biological, behavioral and social factors are all discussed, behavioral factors ap-pear to be the most important drivers of transmission [6, 7]. Sexual practices that put MSM particularly at risk are currently a matter of discussion. For example, sexualized drug use is associated with additional risks, e.g., sharing of injection equipment or sexual encounters with increased potential for anal or rectal trauma [8-12]. And while some discussion remains as to the exact ranking of transmission drivers, current evidence in-dicates that an interplay between sexual and drug use behaviors is extremely influential [13].
Among HIV-infected MSM, the incidence-rate of HCV reinfection after successful treat-ment—5.93-9.2/100 person-years (py)—is the highest of any current grouping [14, 15]. Considering that reinfection is associated with complex behavioral risk factors, success-ful micro-elimination will demand a combination of behavior change and medical treat-ment as numerous researchers have argued [13, 16-18].
In 2015, noting the urgent need to prevent HCV reinfection in HIV-infected MSM, Swiss researchers decided to test an approach that combined pharmaceutical treatment with a behavioral counselling intervention [19]. Their decision was supported by a mathematic modelling study indicating that, without behavioral changes, micro-elimination would not be possible in Switzerland [20]. Until that time, no behavioral intervention focusing on HCV-related sexual risk reduction has been described or evaluated; five years later, to our knowledge, this is the first such study.
The overall immediate aim of this thesis was to strengthen the comprehensive behav-ioral prevention strategy, with the long-term aim of improving HCV micro-elimination. Guided by the Medical Research Council (MRC) framework for complex interventions in health [21, 22] in our process’s first phase, we developed an HCV-specific sexual risk reduction intervention by adapting an evidence-based HIV sexual risk reduction in-tervention. In the second, after feasibility testing the resulting intervention within the framework of the Swiss HCVree Trial, we evaluated its impact.
Chapter 1 provides an introduction to our topic in terms of content and methodology. Its first part focuses on HCV elimination and the strategies necessary to achieve that goal; the second presents arguments supporting our approach and choice of methods.
Chapter 2 presents our goals.
MRC framework phase I
Chapter 3 describes our development of a behavioral counselling intervention. We worked with the concept of scaling-out, i.e., the process of improving the intervention’s fit to a new context while maintaining its effectiveness [23]. This approach was influenced by our increased awareness of implementation research and the importance of “putting evidence into practice” [24]. The adaptation process was guided by the Intervention Map-ping (IM) Adapt approach [25] and a contextual analysis. At many steps, broad stake-holder involvement helped us discover the needed changes. The adapted intervention was called HCVree and me.
MRC framework Phase II
The project’s second phase focused on the evaluation of the HCVree and me feasibility test. We were especially interested in how the intervention worked in practice and to use this knowledge for further improvement when considering scalability [26, 27]. We used mixed methods, with methods chosen as appropriate for each evaluation question [26].
In the Swiss HCVree Trial, the decision was made to invite only men who reported in-consistent condom use with non-steady partners (nsCAI) in the previous year. In chapter 4, we examined the appropriateness of using this selection criterion for the behavioral intervention in 118 of our 122-man sample. We analyzed their self-reported sexual and drug use behaviors at baseline. While 72 (61%) qualified for the intervention, other po-tential HCV transmission risk behaviors were also frequent, e.g., 52 (44%) had used drugs, 44 (37%) reported sexualized drug use and 17 (14%) had injected drugs. This finding highlighted that the chosen screening question had excluded numerous men who indicated a need to develop prevention-centered behaviors.
Chapter 5 reports the results of a qualitative study in the behavioral intervention’s par-ticipants. For this, our aim was to understand the intervention program’s meaning for participants regarding their sexuality and risk behaviors. One-third of participants (n=17) agreed to semi-structured interviews. The narratives revealed one constitutive theme: Giving hepatitis C a place and living without it again, illustrating first how participants positioned themselves to the program and thereafter their sense-making work in relation to it.
All participants responded to the intervention program, but with considerable variation. Therefore, we differentiated three sense-making work: Avoid risks: get rid of hepatitis C for life; Minimize risks: live as long as possible without hepatitis C; and Accept risk: live with the risk of hepatitis C. This work summed up not only the range of the participants’ various responses to the intervention but also their later management of sexual risks. Also, regardless of their responses to the behavioral counselling intervention, the results also revealed that treatment had had a significant influence on their sense-making.
The fourth article, described in chapter 6, built on these sense-making groups. This study’s aim was to validate that the three groups also differed in the content of sexual risk reduction goal-setting and behavior change. To achieve this, we conducted a con-vergent mixed-method study. The qualitative analysis identified seven domains reflecting broader risk reduction strategies; the quantitative analysis largely supported the differ-entiation of the groups. The merged data validated our hypothesis. This finding is im-portant because the qualitatively generated sense-making work groups can now be used to inform further intervention development and tailoring. However, the analysis also indi-cated that our quantitative instrument was sub-optimal for measuring initiated diverse risk reduction strategies and emphasizes the need for better outcome variables/questionnaire items.
Chapter 7 presents a synthesis and discussion of the results, particularly three key find-ings. We begin by describing how the innovative combination of traditional and newer implementation frameworks facilitated the intervention’s successful scaling-out. Follow-ing the feasibility test, we identified and described the participants’ various responses regarding their sense-making work. The resulting groups reflected the diversity of their experiences with both the behavioral intervention and the DAA treatment. The chapter ends with an explanation of how the participants’ dynamic sexual behavior influenced not only our interpretation of evaluation findings but also the need for further adaptations to the intervention.
These studies’ findings highlighted various implications for future research and clinical practice. As a next step, we recommend revising the intervention according to the results of our evaluation, then preparing for the next trial—particularly to better cover sexualized drug use behaviors. For clinical practice, we recommend encouraging joint discussion within clinical teams to raise awareness of potential reinfection-related stigma, of assess-ment of problematic sexualized drug use behaviors and of how to use clinical appoint-ments as teachable moments. This will certainly impact patient-centered care and will very likely also improve patient outcomes
Process evaluation of a lifestyle physical activity counseling intervention for in-patients with major depressive disorders
No full textBackground: Major Depressive Disorder is a wide-spread and often chronic psychiatric disease affecting physical and psycho-social health. The global lifetime prevalence is 15-18% and approximately 12% of afflicted people are admitted to in-patient treatment at least once during their lifetime. Insufficient physical activity is prevalent among afflicted individuals, despite its potential antidepressant and protective effects. Theory-based interventions targeting psycho-social determinants of and implicit attitudes towards physical activity behavior can be effective in increasing physical activity levels. In particular, physical activity counseling has proven positive effects in healthy people as well as in out-patients. It remains unknown how a physical activity counseling intervention can be implemented and work during and after inpatient treatment, which contextual factors may be influential and how physical activity levels may be affected.
Aim: The aim of this PhD thesis was to conduct a process evaluation of a theory-based, tailored lifestyle physical activity counseling intervention for in-patients with Major Depressive Disorder within the PACINPAT (physical activity counseling for in-patients with Major Depressive Disorders) study. This was conducted according to the Medical Research Council Framework and entailed quantitatively and qualitatively evaluating contextual factors, intervention implementation, mechanisms of impact as well as behavioral outcomes (objectively measured and self-reported physical activity levels).
Methods: The PACINPAT study is a multi-center randomized controlled trial set in four Swiss psychiatric clinics. Adults who were insufficiently physically active upon admission to inpatient treatment were recruited (N = 244) and randomized into an intervention group (n = 123) who received tailored lifestyle physical activity counseling sessions (two in-person sessions and 26 sessions via telephone) for 12 months or a control group (n = 121) who received two in-person non-tailored counseling sessions during in-patient treatment. Quantitative data were collected at baseline (approximately 2 weeks after admission to in-patient treatment), post (approximately 6 weeks after discharge from in-patient treatment) and follow-up (12 months after discharge from in-patient treatment). Qualitative data were collected upon completion of the intervention and study participation. Data pertaining to psycho-social health (perceived stress, health status and insomnia symptoms) as well as psycho-social determinants of physical activity were measured with validated and reliable questionnaires. Data pertaining to implicit attitudes towards physical activity were assessed with a computer-based Single Target Implicit Associations Test. Self-reported physical activity was assessed via structured interviews based on the Simple Physical Activity Questionnaire. Additionally, physical activity was measured with a hip worn accelerometer. Major Depressive Disorder symptoms were measured both by self-report with the Beck Depression Inventory as well as via structured interview based on the Hamilton Depression Scale. Data pertaining to the implementation of the intervention were collected from the implementers’ documentation and participant satisfaction data were collected via questionnaire. Qualitative data were gathered via semi-structured interviews conducted in-person and online.
Results: The evaluation of contextual factors revealed that, the unforeseen contextual circumstance of a global pandemic caused by the Coronavirus Disease 2019 and ensuing state-mandated lockdown seems not have elicited differences in psycho-social health, psycho-social determinants of and implicit attitudes towards physical activity as well as self-reported physical activity levels among individuals who were in in-patient treatment at that time. Depression severity did, however, seem to negatively impact certain psycho-social determinants of physical activity. The evaluation of the intervention implementation showed that the intervention dose varied between early dropouts and completers with high and low participation rates. The in-person intervention fidelity was partly achieved and so adapted, whereas the remote intervention fidelity was well achieved. Additionally, the participants reported satisfaction with the intervention and implementers. Upon deeper investigation of the mechanism of impact, i.e., how the intervention was experienced, four experience patterns were recognizable (expansive, adoptive, stagnant and confirmatory), which influenced both physical activity behavior and well-being during and after the intervention. The evaluation of the short-term intervention outcomes (6 weeks after discharge from in-patient treatment) revealed that moderate-to-vigorous physical activity as well as step count decreased in both the intervention and control group, however less so in the intervention group, indicating that physical activity counseling may be a valuable asset to explore further. Additionally, psycho-social determinants of and implicit attitudes towards physical activity seemed to remain unchanged between the groups, but positive changes (decreases in negative outcome expectancies and increases in action and coping planning) were seen over time in both groups.
Conclusion: The theory-based, tailored lifestyle physical activity counseling intervention was
implemented successfully during and after in-patient treatment. The process evaluation of the
contextual factors, intervention implementation, mechanism of impact and short-term outcomes revealed valuable insights into future intervention refinement. This may entail adapting physical activity counseling to illness severity and how the individual is managing their illness. Especially with potentially declining physical activity behavior during the transition out of inpatient treatment, offering support during this vulnerable phase is particularly important. Further research is required, to ascertain the long-term effects of physical activity counseling in in-patients with Major Depressive Disorder. Followed by the adaptation and broader dissemination of physical activity promotion programs to reach those most in need
Validation of the newly developed Advanced Practice Nurse Task Questionnaire: A national survey.
No full textAIM
To describe psychometric validation of the newly developed Advanced Practice Nurse Task Questionnaire.
DESIGN
Cross-sectional quantitative study.
METHODS
The development of the questionnaire followed an adapted version of the seven steps described in the guide by the Association for Medical Education in Europe. A nationwide online survey tested the construct and structural validity and internal consistency using an exploratory factor analysis, Cronbach's alpha coefficient and a Kruskal-Wallis test to compare the hypotheses.
RESULTS
We received 222 questionnaires between January and September 2020. The factor analysis produced a seven-factor solution as suggested in Hamric's model. However, not all item loadings aligned with the framework's competencies. Cronbach's alpha of factors ranged between .795 and .879. The analysis confirmed the construct validity of the Advanced Practice Nurse Task Questionnaire. The tool was able to discriminate the competencies of guidance and coaching, direct clinical practice and leadership across the three advanced practice nurse roles clinical nurse specialist, nurse practitioner or blended role.
CONCLUSION
A precise assessment of advanced practice nurse tasks is crucial in clinical practice and in research as it may be a basis for further refinement, implementation and evaluation of roles.
IMPACT
The Advanced Practice Nurse Task Questionnaire is the first valid tool to assess tasks according to Hamric's model of competencies independently of the role or the setting. Additionally, it distinguishes the most common advanced practice nurse roles according to the degree of tasks in direct clinical practice and leadership. The tool may be applied in various countries, independent of the degree of implementation and understanding of advanced nursing practice.
REPORTING METHOD
The STARD 2015 guideline was used to report the study.
PATIENT OR PUBLIC CONTRIBUTION
No patient or public contribution
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