patient-HCP Relationship Research Articles

Decision-making for children and adolescents: a scoping review of interventions increasing participation in decision-making.

To review and synthesize the literature on interventions to facilitate shared decision-making or to increase participation in decision-making in pediatrics focusing on interventions for children and adolescents. We systematically searched three electronic databases (September 2021, update in September 2022). We included studies that aimed to increase involvement of children and adolescents in medical or treatment decisions, regardless of study design and reported outcomes. Study quality was assessed using the MMAT. The synthesis strategy followed a narrative methodology. 21 studies met the inclusion criteria. Interventions aimed to increase participation by provision of information, encouraging active participation and collaboration. Didactic strategies included digital interactive applications (n = 12), treatment protocols and guiding questions (n = 12), questionnaires or quizzes about patients' condition or their knowledge (n = 8), visual aids (n = 4), and educational courses (n = 1). Findings indicate positive effects on some of the investigated outcomes. However, the heterogeneity of studies made it difficult to draw consistent conclusions about the effectiveness of interventions. Interventions used a variety of approaches to facilitate SDM and increase participation. The findings suggest that interventions have inconsistent effects across different outcome variables. The evidence was limited due to the methodological shortcomings of the included studies. To increase the participation of children and adolescents in decision-making, interventions targeting them are needed. Most intervention focus on the provision of information and encouragement for active participation. The results suggest high feasibility and, mostly, positive effects in participation, health-related knowledge, patient-HCP relationship, and adherence The study highlights that further high-quality studies using similar outcome parameters are needed to investigate the effects of interventions to facilitate participation in decision-making.

A 360° Approach to Patient Care in Aesthetic Facial Rejuvenation.

Aesthetic medicine has traditionally focused on addressing perceived problem areas, with lack of long-term planning and engagement. This article describes a patient-centric model for nonsurgical aesthetic medical practice, termed the 360° approach to facial aesthetic rejuvenation. The 360° approach was divided into 4 foundational pillars. Medical literature, the authors' clinical experiences, and results from patient satisfaction surveys were used to support the approach. Pillar 1 describes the development of a complete understanding of the patient, based on the use of active listening principles, to characterize the patient's current aesthetic concerns, lifestyle, medical and treatment history, treatment goals, attitude toward aesthetic treatment, and financial resources. Pillar 2 involves conducting a comprehensive facial assessment in contrast to a feature-specific assessment, considering multiple facial tissues and structures and their interrelationships, thus helping to prevent the unanticipated consequences of narrowly focused treatment. Pillar 3 describes leveraging all available treatments and techniques in the development of an initial treatment plan arising from the facial assessment. Pillar 4 adds a time dimension to treatment planning, working toward the goal of a long-term modifiable treatment timeline, with full patient support and involvement; this is designed to facilitate a durable, sustained relationship between the patient and aesthetic healthcare professional (HCP). Although implementation involves substantial commitment and time, the patient-oriented focus of the 360° approach can help achieve optimal patient outcomes and the development of enduring patient-HCP relationships.

Understanding communication between patients and healthcare professionals regarding comprehensive biomarker testing in precision oncology: A scoping review.

Precision oncology, using comprehensive biomarker testing (cBT) to inform individual cancer diagnosis, prognosis and treatment, includes increasingly complex technology and clinical data sets. People impacted by cancer (patients and caregivers) and healthcare professionals (HCPs) face distinct challenges in navigating the cBT and personalized treatment landscape. This review summarizes evidence regarding cBT-related communication between people impacted by cancer and HCPs and identifies important avenues for future research in precision oncology. A scoping review was conducted using records published in PubMed during January 2017-August 2022, focusing on the breadth of topics on patient-HCP communication and knowledge resources used by HCPs as guidance in cBT-related communication. Data were extracted from records meeting inclusion criteria, and findings were summarized according to main topics. The search identified 287 unique records and data were extracted from 42 records, including nine from expert input. Most records originated from the United States included patients with different types of cancer, and oncologists were the main HCPs. Patients' motivation for undergoing cBT and receiving results was generally high in different settings. However, patients' understanding of cBT-related concepts was limited, and their knowledge and information preferences changed based on cBT implications and significance to family members. HCPs were valued by patients as a trusted source of information. Limited evidence was available on HCPs' information-seeking behavior and factors influencing cBT-related knowledge and confidence, often self-reported as insufficient. Patient education by knowledgeable and confident HCPs, information management and a caring patient-HCP relationship communicating continuity of care regardless of cBT results are crucial to empower patients and shared decision-making in precision oncology. More data on the process and structure of cBT-related communication, distinction between and characterization of different timepoints of patient-HCP interactions are needed.

Non-adherence, medication beliefs and symptom burden among patients receiving hemodialysis -a cross-sectional study

BackgroundNon-adherence to medication is a common and complex issue faced by individuals undergoing hemodialysis (HD). However, more knowledge is needed about modifiable factors influence on non-adherence. This study investigated the prevalence of non-adherence, medication beliefs and symptom burden and severity among patients receiving HD in Denmark. Associations between non-adherence, medications beliefs and symptom burden and severity were also explored.MethodA cross-sectional questionnaire-based multisite study, including 385 participants. We involved patient research consultants in the study design process and the following instruments were included: Medication Adherence Report Scale, Beliefs about Medication Questionnaire and Dialysis Symptom Index. Logistic regression analysis was performed.ResultsThe prevalence of non-adherence was 32% (95% CI 27–37%) using a 23-point-cut-off. Just over one third reported being concerned about medication One third also believed physicians to overprescribe medication, which was associated with 18% increased odds of non-adherence. Symptom burden and severity were high, with the most common symptoms being tiredness/ lack of energy, itching, dry mouth, trouble sleeping and difficulties concentrating. A high symptom burden and/or symptom severity score was associated with an increased odd of non-adherence.ConclusionThe study found significant associations between non-adherence and, beliefs about overuse, symptom burden and symptom severity. Our results suggest health care professionals (HCP) should prioritize discussion about medication adherence with patients with focus on addressing patient-HCP relationship, and patients’ symptom experience. Future research is recommended to explore the effects of systematically using validated adherence measures in clinical practice on medication adherence, patient-HCP communication and trust. Additionally, studies are warranted to further investigate the relationship between symptom experience and adherence in this population.Trial registrationNCT03897231.

The Italian versions of the This Is ME Questionnaire and the Patient Dignity Question: Understanding personhood and supporting dignity in patients with terminal cancer.

Patients with cancer at the end of life may suffer from high psychological distress, a sense of demoralization, and a lack of dignity related to their medical condition. The This Is ME (TIME) Questionnaire and the Patient Dignity Question (PDQ) are clinical tools developed to achieve comprehensive and personalized patient care and to deepen our understanding of personhood. The objective of this study was to translate and validate the TIME Questionnaire, which contains the PDQ, into Italian to evaluate patient satisfaction of the Italian version of these tools and to identify essential themes elicited by the tools. The validation process consisted of a forward and back translation stage, data collection from a sample of 60 patients with terminal cancer, and a final consultation with a panel of experts to identify patient themes using the results of the tool. Overall, participants felt that the PDQ/TIME questionnaire captured their essence as a person, allowed them to express their values and beliefs, and helped the health care professionals (HCP) to take better care of them. Content analysis identified "family relationships," "global pain," and "family roles and accomplishments" as being of most importance to patients. The Italian versions of the PDQ/TIME Questionnaire are clear, precise, understandable, and focused on understanding personhood in patients with advanced cancer. These tools should be used to proactively enhance patient-caregiver and patient-HCP relationships and to develop new perspectives of patient care focused on the critical dimension of personhood.

Barriers and enablers to delivering opportunistic behaviour change interventions during the COVID-19 pandemic: A qualitative study in healthcare professionals.

In line with public health policy, healthcare professionals (HCPs) working in the UK's National Health Service (NHS) are encouraged to deliver opportunistic health behaviour change interventions during routine consultations. The impact of the COVID-19 pandemic on healthcare delivery has been wide-ranging, but little is known about how the pandemic has affected thedelivery of health behaviour change interventions. The present study aimed to examine the barriers and enablers to delivering opportunistic behaviour change interventions during the COVID-19 pandemic. Twenty-five qualitative semi-structured interviews were conducted in January 2022 with a range of patient-facing healthcare professionals (including nurses, physiotherapists, dieticians, doctors and midwives) working in the NHS. Data were analysed using reflexive thematic analysis. Two overarching themes were generated: (1) the healthcare system's response to COVID-19, and (2) maintaining good HCP-patient relationships: reluctance and responsibility. COVID-19-related barriers included exacerbated staffing pressures and a perceived inability to use IT equipment to facilitate conversations about health behaviour change (due to poor internet connectivity or ill-equipped platforms). COVID-19-related enablers included the use of video consultations enabling less awkward and more honest conversations about health behaviours. However, some barriers and enablers remained the same as pre-pandemic, such as issues of role responsibility for discussing health behaviour change with patients, balancing holistic wellbeing advice with maintaining positive patient-HCP relationships, and reluctance to deliver opportunistic behaviour change interventions. The increased use of remote consultations may facilitate the delivery of opportunistic health behaviour change interventions by healthcare professionals. However, there is also a strong need to improve staffing levels, in order that staff have the psychological and physical capabilities to engage patients in these conversations.

Patient participation in tele-emergencies - experiences from healthcare professionals in northern rural Sweden.

Telemedicine provides opportunities for access to health care in remote and underserved areas. In parts of northern rural Sweden telemedicine is used to connect a remote physician by a video-conference system to an emergency room, staffed by nurses during on-call hours. This can be called 'tele-emergency'. Patient participation, often described as mutual information exchange, a trustful relationship and involvement in decision-making, is challenged in emergency care by short encounters, deteriorating patients and a stressful work situation. Nevertheless, patient participation may be important for the patients' experience. Healthcare professionals (HCPs) have been identified as 'gatekeepers' for patient participation, therefore putting their perspective in focus is important. As emergency care in rural areas is increasingly turning toward telemedicine, patient participation in tele-emergencies needs to be better understood. The aim of this study was to explore and characterise HCPs' perspectives of patient participation in tele-emergencies in northern rural Sweden. A qualitative design based on interviews was used. HCPs working in cottage hospitals in northern rural Sweden were included. Semi-structured interviews were performed, first, in multidisciplinary groups of three informants. Later, because of limited experience of tele-emergencies in the groups, individual interviews with HCPs with substantial experience were added. A qualitative content analysis of the interview transcripts was conducted. A total of 44 HCPs from northern inland Sweden participated in the interviews. The content analysis resulted in two themes, six categories and 19 subcategories. Theme 1, 'To see, understand, and to build trust through the digital barrier', contains descriptions of the interpersonal relationship between the patient and the HCPs, and the challenges when interacting with the patient during a tele-emergency. The informants also described a need for boundaries between the professional team and the patient. The categories in theme 1 are 'understanding the patient's point of view', 'building a trustful relationship', and 'needing a private space without the patient'. Theme 2, 'The (im)balance of power - tele-emergency reinforces the positions', mirrors the power asymmetry in the patient-professional relationship, and the potential impact of the tele-emergency on the different roles. Tele-emergencies were described as a risk that potentially could weaken the patient's position, but also as providing an opportunity to share power. Categories in theme 2 are 'medical conditions limit patient participation', 'patient involvement in decision-making requires understanding' and 'the inferior patient and the superior professionals'. This study sheds light on patient participation in tele-emergencies in a remote rural setting from the HCP's perspective. The tele-emergency set-up affected patient participation by interfering with familiar patient-HCP relationships and changing group dynamics in interactions with the patient. Due to the extensive changes of the conditions for patient participation imposed in tele-emergencies, suggestions for actions improving patient participation are made.

Diagnosis, management and impact on patients' lives of cancer-related neuropathic pain (CRNP): A European survey.

This study assessed the impact of cancer-related neuropathic pain (CRNP) on patients and the importance of the patient-healthcare professional (HCP) relationship in diagnosis and management. A quantitative online survey was conducted involving adult patients from 13 European countries who had been diagnosed with treatable cancer and experienced symptoms of peripheral neuropathy. Of 24,733 screened respondents, 549 eligible persons met the inclusion criteria and completed the questionnaire. Among individuals still experiencing pain, 75% rated it as 'severe' or 'moderate'. In addition, 61% reported a negative impact on day-to-day activities, and 30% said they had stopped working as a result. A third of respondents had received no diagnosis of CRNP despite reporting painful symptoms to an HCP. HCPs spending enough time discussing pain and understanding the impact on patients' lives were each associated with an increased likelihood of a formal CRNP diagnosis. Compared with individuals currently in active cancer treatment, cancer survivors were less likely to have a diagnosis of CRNP or regular pain conversations with HCPs. CRNP remains under-recognised despite its substantial impact on patients' lives. Clinical practice may be improved by strengthening patient-HCP relationships around pain discussions and increasing the focus on pain management among cancer survivors.

Experiences of patients and health care professionals on the quality of telephone follow-up care during the COVID-19 pandemic: a large qualitative study in a multidisciplinary academic setting

ObjectiveTo evaluate the perceived quality of follow-up telephone consultations (TCs) from the perspective of patients and healthcare professionals (HCPs) of multiple medical disciplines during the COVID-19 pandemic.DesignA qualitative study using...

Meet\u2013Test\u2013Treat for HCV management: patients\u2019 and clinicians\u2019 preferences in hospital and drug addiction services in Italy

BackgroundIt has been estimated that the incidence of chronic hepatitis C virus (HCV) will not decline over the next 10 years despite the improved efficacy of antiviral therapy because most patients remain undiagnosed and/or untreated. This study aimed to investigate the opinion of relevant target populations on the practicability, effectiveness and best modalities of the test-and-treat approach in the fight against HCV in Italy.MethodsA survey was delivered to patients with HCV from the general population, patients from drug addiction services, hospital physicians and healthcare providers for drug addiction services.ResultsFor both hospital clinicians and SerD HCPs, tolerability is shown as the most important feature of a suitable treatment. Time to treatment (the time from first contact to initiation of treatment) is deemed important to the success of the strategy by all actors. While a tolerable treatment was the main characteristic in a preferred care pathway for general patients, subjects from drug addiction services indicated that a complete Meet–Test–Treat pathway is delivered within the habitual care center as a main preference. This is also important for SerD HCPs who are a strong reference for their patients; hospital clinicians were less aware of the importance of the patient-HCP relationship in this process.ConclusionThe health system is bound to implement suitable pathways to facilitate HCV eradication. A Meet–Test–Treat program within the drug addiction services may provide good compliance from subjects mainly concerned with virus transmission.

"I Am Okay With It, But I Am Not Going to Do It": The Exogenous Factors Influencing Non-Participation in Medical Assistance in Dying.

Medical assistance in dying (MAID) processes are complex, shaped by legislated directives, and influenced by the discourse regarding its emergence as an end-of-life care option. Physicians and nurse practitioners (NPs) are essential in determining the patient’s eligibility and conducting MAID provisions. This research explored the exogenous factors influencing physicians’ and NPs’ non-participation in formal MAID processes. Using an interpretive description methodology, we interviewed 17 physicians and 18 NPs in Saskatchewan, Canada, who identified as non-participators in MAID. The non-participation factors were related to (a) the health care system they work within, (b) the communities where they live, (c) their current practice context, (d) how their participation choices were visible to others, (e) the risks of participation to themselves and others, (f) time factors, (g) the impact of participation on the patient’s family, and (h) patient–HCP relationship, and contextual factors. Practice considerations to support the evolving social contact of care were identified.

884-P: Health Care Experiences among People with Type 2 Diabetes: Identifying Social Determinants and Areas to Improve

A positive relationship between healthcare providers (HCP) and patients can benefit overall quality of care. As type 2 diabetes (T2) disproportionately affects Black, Indigenous, and people of color (BIPOC), this study sought to identify areas of improvement for provider-patient interactions and better understand how HCP experiences may differ based on patients’ racial or ethnic identity. People with T2 from an opted-in US research panel completed an online survey in September 2020 (n=3,145). Respondents were shown 4 statements about HCP experiences and asked to rate their agreement on a 5-point Likert scale. Demographic and health information were also collected. Among all T2 respondents with opinions of their HCP appointments, 17% felt that their appointment was rushed, 16% felt their HCP doubted their ability to manage diabetes, and 13% felt overwhelmed after their appointment. Additionally, when comparing white respondents to all BIPOC respondents who offered an opinion (n=449), BIPOC respondents were more likely to feel overwhelmed after their appointment and were twice as likely to feel blamed for having diabetes. These findings reveal some specific factors that may be contributing to disparities in patient-HCP relationships and suggest areas for improvement for HCPs when interacting with T2 patients from diverse backgrounds. Disclosure S. Suhl: Other Relationship; Self; dQA Self; dQA Self; dQA Self; Abbott Diabetes, Ascensia Diabetes Care, Dexcom, Inc., Insulet Corporation, LifeScan, Lilly Diabetes, Medtronic, Roche Diabetes Care, Senseonics, Tandem Diabetes Care. J. Stevenson: Other Relationship; Self; Abbott, Ascensia Diabetes Care, Dexcom, Inc., Eli Lilly and Company, Insulet Corporation, LifeScan, Medtronic, Roche Diabetes Care, Senseonics, Tandem Diabetes Care. J. Tait: Other Relationship; Self; dQA Self; Abbott Diabetes, American Diabetes Association, Ascensia Diabetes Care, Boehringer Ingelheim International GmbH, Dexcom, Inc., Eli Lilly and Company, Insulet Corporation, Medtronic, Novo Nordisk Inc., Sanofi.

Acculturation, HIV-Related Stigma, Stress, and Patient-Healthcare Provider Relationships Among HIV-Infected Asian Americans: A Path Analysis.

Acculturation may limit HIV-positive Asian Americans’ active interactions with patient-healthcare providers (HCP) and utilization of HIV healthcare services; however, the specific mediation effect of acculturation still unknown. A bias-corrected factor score path analysis was performed to examine the proposed model of relations among acculturation, stigma, stress, and patient-HCP relationships. A convenience sample of 69 HIV-positive Asian Americans in San Francisco, Los Angeles, and New York City were recruited and collect data were collected on demographics, HIV-related stigma, stress, and patient-HCP relationships. HIV stigma and stress had a direct, negative effect on patient-HCP relationships. Acculturation had a positive total effect on patient-HCP relationships, and was mediated by HIV stigma and stress. A acculturation also had a direct impact on stigma and stress. Acculturation, HIV-related stigma, and stress are key elements to achieving good patient-HCP relationships, and provide insights on the design of culturally sensitive interventions to improve patient-HCP relationships.

Explaining Differences in the Acceptability of 99DOTS, a Cell Phone-Based Strategy for Monitoring Adherence to Tuberculosis Medications: Qualitative Study of Patients and Health Care Providers.

Background99DOTS is a cell phone–based strategy for monitoring tuberculosis (TB) medication adherence that has been rolled out to more than 150,000 patients in India’s public health sector. A considerable proportion of patients stop using 99DOTS during therapy.ObjectiveThis study aims to understand reasons for variability in the acceptance and use of 99DOTS by TB patients and health care providers (HCPs).MethodsWe conducted qualitative interviews with individuals taking TB therapy in the government program in Chennai and Vellore (HIV-coinfected patients) and Mumbai (HIV-uninfected patients) across intensive and continuation treatment phases. We conducted interviews with HCPs who provide TB care, all of whom were involved in implementing 99DOTS. Interviews were transcribed, coded using a deductive approach, and analyzed with Dedoose 8.0.35 software (SocioCultural Research Consultants, LLC). The findings of the study were interpreted using the unified theory of acceptance and use of technology, which highlights 4 constructs associated with technology acceptance: performance expectancy, effort expectancy, social influences, and facilitating conditions.ResultsWe conducted 62 interviews with patients with TB, of whom 30 (48%) were HIV coinfected, and 31 interviews with HCPs. Acceptance of 99DOTS by patients was variable. Greater patient acceptance was related to perceptions of improved patient-HCP relationships from increased phone communication, TB pill-taking habit formation due to SMS text messaging reminders, and reduced need to visit health facilities (performance expectancy); improved family involvement in TB care (social influences); and from 99DOTS leading HCPs to engage positively in patients’ care through increased outreach (facilitating conditions). Lower patient acceptance was related to perceptions of reduced face-to-face contact with HCPs (performance expectancy); problems with cell phone access, literacy, cellular signal, or technology fatigue (effort expectancy); high TB- and HIV-related stigma within the family (social influences); and poor counseling in 99DOTS by HCPs or perceptions that HCPs were not acting upon adherence data (facilitating conditions). Acceptance of 99DOTS by HCPs was generally high and related to perceptions that the 99DOTS adherence dashboard and patient-related SMS text messaging alerts improve quality of care, the efficiency of care, and the patient-HCP relationship (performance expectancy); that the dashboard is easy to use (effort expectancy); and that 99DOTS leads to better coordination among HCPs (social influences). However, HCPs described suboptimal facilitating conditions, including inadequate training of HCPs in 99DOTS, unequal changes in workload, and shortages of 99DOTS medication envelopes.ConclusionsIn India’s government TB program, 99DOTS had high acceptance by HCPs but variable acceptance by patients. Although some factors contributing to suboptimal patient acceptance are modifiable, other factors such as TB- and HIV-related stigma and poor cell phone accessibility, cellular signal, and literacy are more difficult to address. Screening for these barriers may facilitate targeting of 99DOTS to patients more likely to use this technology.

Factors that influence adherence to aspirin therapy in the prevention of preeclampsia amongst high-risk pregnant women: A mixed method analysis.

BackgroundNon-adherence with medications in pregnancy is increasingly recognized and often results in a higher rate of preventable maternal and fetal morbidity and mortality. Non-adherence with prophylactic aspirin amongst high-risk pregnant women is associated with higher incidence of preeclampsia, preterm delivery and intrauterine growth restriction. Yet, the factors that influences adherence with aspirin in pregnancy, from the women’s perspective, remains poorly understood.ObjectiveThe study is aimed at understanding the factors, from the women’s perspective, that influenced adherence with prophylactic aspirin in their pregnancy.Study designA sequential-exploratory designed mixed methods quantitative (n = 122) and qualitative (n = 6) survey of women with recent high-risk pregnancy necessitating antenatal prophylactic aspirin was utilized. Women recruited underwent their antenatal care in one of three high-risk pregnancy clinics within the South Western Sydney Local Health District, Australia. The quantitative study was done through an electronic anonymous survey and the qualitative study was conducted through a face-to-face interview. Data obtained was analysed against women’s adherence with aspirin utilizing phi correlation (φ) with significance set at <0.05.ResultsTwo key themes, from the women’s perspective, that influenced their adherence with aspirin in pregnancy were identified; (1) pill burden and non-intention omission (2) communication and relationship with health care provider (HCP). Pill burden and its associated non-intentional omission, both strongly corelated with reduced adherence (Φ = 0.8, p = 0.02, Φ = 0.8, p<0.01) whilst the use of reminder strategies minimized accidental omission and improved adherence (Φ = 0.9, p<0.01). Consistent communication between HCPs and a good patient-HCP relationship was strongly associated with improved adherence (Φ = 0.7, p = 0.04, Φ = 0.9, p = <0.01) and more importantly was found to play an important role in alleviating factors that had potentials to negatively influence adherence with aspirin in pregnancy.ConclusionThis study identified factors that both positively and negatively influenced adherence with aspirin amongst high-risk pregnant women. Is highlights the importance in recognizing the impact of pill burden in pregnancy and the need to counsel women on the utility of reminder strategies to minimize non-intentional omission. Importantly, it emphasizes on the importance of a positive patient-HCP relationship through effective and consistent communication to achieve the desired maternal and fetal outcomes.

Understanding the emotions of patients with inadequate response to antidepressant treatments: results of an international online survey in patients with major depressive disorder

BackgroundEvidence suggests that nearly half of patients with major depressive disorder (MDD) do not achieve an adequate response to antidepressant treatments (ADTs), which impacts patients’ functioning, quality of life (QoL), and well-being. This patient survey aimed to better understand patient perspectives on the emotional impact of experiencing an inadequate response to ADTs.MethodsAn online survey was conducted in 6 countries with respondents diagnosed with MDD and experiencing an inadequate response to ADTs. The survey was designed to explore how patients felt about their medications and health care provider (HCP). Those indicating they were ‘frustrated’ with their medications and/or HCP were asked to provide reasons for their frustration and its impact on their relationship with their HCP and decisions about their treatment.ResultsOverall, 2096 respondents with MDD and inadequate response to ADT completed the survey. The most frequent emotion reported by patients regarding their medication was frustration (29.8% of respondents) followed by hopeless (27.4%) and apprehensive/anxious/scared (27.4%). Regarding their HCP, patients reported feeling understood (31.6%) and trusting/confident (28.8%) most often; however, 19.2% reported feelings of frustration. Main reasons for frustration with medication were poor symptom control/lack of efficacy (59.3%) and tolerability issues (19.7%), and the main reasons for frustration with their HCP were not feeling heard (22.4%), ineffective treatment (13.5%) and feeling rushed/lack of quality visit (12.5%). The longer the current episode duration and the greater the disruption to daily living, the more likely the respondents experienced feelings of frustration with medication. Feelings of frustration lead to adherence issues, with 33.3 and 27.3% of respondents indicating their frustration with their medication and HCP, respectively, made them want to quit their medication. Approximately one in six patients frustrated with either their medication and/or HCP indicated their frustration had resulted in them not taking their medication regularly. Frustration with their HCP also impacted patient’s confidence in HCPs abilities (34.7%), sharing less information with their HCP (28.9%) as well as missing appointments (17.4%) and medications (14.5%).ConclusionsFeelings of frustration are frequent in patients with inadequate response to ADT and this frustration may impact treatment adherence and the patient-HCP relationship.

Perspectives from the Patient and the Healthcare Professional in Multiple Sclerosis: Social Media and Participatory Medicine.

When faced with a diagnosis of multiple sclerosis (MS), patients often turn to the Internet and social media to find support groups, read about the experiences of other people affected by MS and seek their advice, and research their condition and treatment options to discuss with their healthcare professionals (HCPs). Here, we examine the use of social media and the Internet among patients with MS, considering its impact on patient empowerment and patient participation in treatment decision-making and MS research. These themes are exemplified with first-hand experiences of the patient author. We also explore the impact of the Internet and social media on the management of patients from the perspective of HCPs, including new opportunities for HCPs to engage in participatory medicine and to improve communication with and among patients. We consider both the benefits afforded to and the potential pitfalls faced by HCPs when interacting with their patients via these routes, and discuss potential concerns around privacy and confidentiality in the use of the Internet and social media in the clinical context. Communication online is driving the evolution of the patient–HCP relationship, and is empowering patients to participate more actively in the decision-making process relating to the provision of their health care. Funding Novartis Pharmaceuticals Corporation.

A structural equation model of patient-healthcare provider relationships and HIV-infected patient outcomes in Chinese populations

ABSTRACTObtaining maximum antiretroviral therapy (ART) adherence is critical for maintaining a high CD4 count and strong immune function in PLWHA. Key factors for achieving optimum adherence include good medication self-efficacy, decreased medication-taking difficulties, and positive patient-healthcare provider (HCP) relationships. Limited studies have analyzed the correlation of these factors and ART adherence in Chinese population. In this paper, structural equation modeling was performed to assess the proposed model of relations between patient-HCP relationships and adherence. Audio Computer-Assisted Self-Interview (ACASI) software was used to collect data on ART adherence and patient variables among 227 PLWHA in Shanghai and Taipei. Participants completed a one-time 60-minute ACASI survey that consisted of standardized measures to assess demographics, recent CD4 counts, self-efficacy, patient-HCP relationship, adherence, and medication-taking difficulties. The data shown the relationship between patient-HCP relationships and adherence was significantly consistent with mediation by medication self-efficacy. However, patient-HCP interaction did not directly influence medication-taking difficulties, and medication-taking difficulties did not significantly affect CD4 counts. Furthermore, patient-HCP interactions did not directly impact CD4 counts; rather, the relation was consistent with mediation (by either better medication self-efficacy or better adherence) or by improved adherence alone. Future interventions should be designed to enhance self-management and provide better patient-HCP communication. This improved communication will enhance medication self-efficacy and decrease medication-taking difficulties. This in turn will improve medication adherence and immune function among PLWHA.

How patients’ use of social media impacts their interactions with healthcare professionals

IntroductionPatients are increasingly accessing online health information and have become more participatory in their engagement with the advent of social media (SM). This study explored how patients’ use of SM impacted their interactions with healthcare professionals (HCPs). MethodsFocus groups (n=5) were conducted with 36 patients with chronic conditions and on medication who used SM for health-related purposes. The discussions lasted 60–90min, were audio-recorded, transcribed verbatim, and thematically analysed. ResultsParticipants did not interact with HCPs on SM and were not expecting to do so as they used SM exclusively for peer interactions. Most reported improvement in the patient-HCP relationship due to increased knowledge, better communication, and empowerment. Participants supplemented HCP-provided information with peer interactions on SM, and prepared themselves for consultations. They shared online health information with HCPs, during consultations, to validate it and to actively participate in the decision-making. Although some participants reported HCP support for their online activities, most perceived overt or tacit opposition. ConclusionParticipants perceived that their SM use positively impacted relationships with HCPs. They felt empowered and were more assertive in participating in decision-making. Practice implicationsHCPs should be aware of patients’ activities and expectations, and support them in their online activities.

EHealth, Participatory Medicine, and Ethical Care: A Focus Group Study of Patients' and Health Care Providers' Use of Health-Related Internet Information.

BackgroundThe rapid explosion in online digital health resources is seen as transformational, accelerating the shift from traditionally passive patients to patients as partners and altering the patient–health care professional (HCP) relationship. Patients with chronic conditions are increasingly engaged, enabled, and empowered to be partners in their care and encouraged to take responsibility for managing their conditions with HCP support.ObjectiveIn this paper, we focus on patients’ and HCPs’ use of health-related Internet information and how it influences the patient-HCP relationship. In particular, we examine the challenges emerging in medical encounters as roles and relationships shift and apply a conceptual framework of relational ethics to examine explicit and nuanced ethical dimensions emerging in patient-HCP interactions as both parties make increased use of health-related Internet information.MethodsWe purposively sampled patients and HCPs in British Columbia, Canada, to participate in focus groups. To be eligible, patients self-reported a diagnosis of arthritis and at least one other chronic health condition; HCPs reported a caseload with >25% of patients with arthritis and multimorbidity. We used a semistructured, but flexible, discussion guide. All discussions were audiotaped and transcribed verbatim. Elements of grounded theory guided our constant comparison thematic analytic approach. Analysis was iterative. A relational ethics conceptual lens was applied to the data.ResultsWe recruited 32 participants (18 patients, 14 HCPs). They attended seven focus groups: four with patients and three with rehabilitation professionals and physicians. Predominant themes to emerge were how use of health-related Internet information fostered (1) changing roles, (2) patient-HCP partnerships, and (3) tensions and burdens for patients and HCPs.ConclusionsRelational aspects such as mutual trust, uncertainty, and vulnerability are illuminated in patient-HCP interactions around health-related Internet information and the negotiated space of clinical encounters. New roles and associated responsibilities have key ethical dimensions that make clear the changes are fundamental and important to understand in ethical care. When faced with tensions and burdens around incorporating health-related Internet information as a resource in clinical encounters, participants described a particular ambivalence illustrating the fundamental changes being negotiated by both patients and HCPs.