Medication and symptom management in persons living with HIV. perceptions and collaboration of persons living with HIV, their close support persons and healthcare providers

Over 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.