Overview of subcutaneous immunoglobulin 16.5% in primary and secondary immunodeficiency diseases

Most primary immunodeficiency diseases, and select secondary immunodeficiency diseases, are treated with immunoglobulin (IG) therapy, administered intravenously or subcutaneously (SCIG). The first instance of IG replacement for primary immunodeficiency disease was a 16.5% formulation administered subcutaneously in 1952. While most SCIG products are now a 10 or 20% concentration, this review will focus on SCIG 16.5% products with a historical overview of development, including the early pioneers who initiated and refined IG replacement therapy, as well as key characteristics, manufacturing and clinical studies. In determining an appropriate IG regimen, one must consider specific patient needs, characteristics and preferences. There are advantages to SCIG, such as stable serum immunoglobulin G levels, high tolerability and the flexibility of self-administered home treatment.

Let's talk about sex(ual) wellbeing! Staff perceptions of implementing a novel service for people with Multiple Sclerosis

Background In people with multiple sclerosis (PwMS), a complex interplay of neurological dysfunction, polypharmacy and psychological issues, contrive to impair their sexual and reproductive wellbeing. Realising an unmet need, the Tayside MS service in collaboration with a sexual health clinician (LJ), established a ‘Pelvic Health Clinic’ to improve quality of life for PwMS. Objective To explore clinician's perceptions of implementing an MS Pelvic Health service with a view to establishing future outcomes for health care professionals about the utility in such a service. Method In this small-scale qualitative case study, we explored clinician's perceptions of such a clinic adjunct. Semi-structured interviews were conducted, transcribed, and thematically analysed in a reflexive manner. Results Five participants consented. Ten sub-themes emerged, which were organised into three main themes: service tensions, patient needs and practitioner feelings. Conclusion Clinicians highly valued the new MS ‘pelvic health clinic’. Knowing that there was a service available empowered clinicians to ask patients about sexual health needs. Specific referral criteria may help further develop the service and improve patient care. Staff welcome training and support in this area or the option to signpost onwards; either mechanism lends itself to enhancing MS patient needs.

Identifying Epidermolysis Bullosa Patient Needs and Perceived Treatment Benefits: An Explorative Study Using the Patient Benefit Index

Epidermolysis bullosa (EB) is a genetic blistering skin condition for which no cure exists. Symptom alleviation and quality of life are therefore central to EB care. This study aimed to gain insight into EB patient needs and benefits from current clinical care. Two questionnaires were administered cross-sectionally to adult EB patients at the Dutch expertise centre for blistering diseases. Patient needs and benefits were analyzed using the patient benefit index survey (PBI-S). Ancillary data were compiled pertaining to self-reported EB severity, pain and pruritus, as well as current and previous treatments. In total, 104 participants were included (response rate 69.8%). Sixty-eight participants comprised the analyzed cohort (n = 36 omitted from analysis). The needs given the highest importance were to get better skin quickly (64.7%) and to be healed of all skin alterations (61.8%). A positive correlation between pain and EB severity and the importance of most needs was observed. Minimal clinically important differences within the PBI-S, relating to reported benefits from clinical care, were reported by 60.3% of the cohort. This study highlights a discrepancy between patient needs and feasible treatment outcomes. Utilizing the PBI-S in conjunction with well-established multidisciplinary care may catalyze the process of tailoring treatments to the needs of individual patients.

Developing Mid-Range Theories for the Maturation of Nursing Care in Colombia

Nursing theory has evolved since the 1960s, from conceptual models to concept analysis to mid-range theories. Mid-range theories are developed primarily for qualitative research, to target patient problems, to respond to patient needs, to identify interventions and the changing patterns of patient care. These mid-range theories cluster in various patterns to provide valid, coherent, and significant interventions. Examples of programs that have dramatically impacted our understanding of nursing and patient care are presented. Thus, by developing and implementing the findings of mid-range theories, nursing care matures, and the standards advance.

Treating Erectile Dysfunction with Prescription Medications & Natural Products: A Pharmacist’s Guide

Stigma surrounding erectile dysfunction creates a difficult environment for appropriate management. Knowledge of the condition and treatment options presents a unique opportunity for pharmacists to optimize a safe and affordable plan that meets patient needs.

NCCN Virtual Patient Advocacy Summit: Cancer Across the Lifespan

Patients with cancer have widely divergent experiences throughout their care from screening through survivorship. Differences in care delivery and outcomes may be due to varying patient preferences, patient needs according to stage of life, access to care, and implicit or explicit bias in care according to patient age. NCCN convened a series of stakeholder meetings with patients, caregivers, and patient advocacy groups to discuss the complex challenges and robust opportunities in this space. These meetings informed the NCCN Virtual Patient Advocacy Summit: Cancer Across the Lifespan held on December 10, 2020, which featured a keynote presentation, multidisciplinary panels, and presentations from patient advocacy organizations. This article encapsulates and expounds upon the findings from the stakeholder meetings and discussions during the summit.

Development of an Insulin Pen is a Patient-Centric Multidisciplinary Undertaking: A Commentary

The goal of human-centered insulin pen design is to relieve the treatment burden of a chronic condition and help affected individuals to feel free of disease. The patient as well as their entire ecosystem should be considered. At Novo Nordisk A/S, we believe that embedding human-centered design at the heart of our development processes is best achieved with multidisciplinary experts in-house to work alongside product development teams and, importantly, the end user. Novo Nordisk introduced the first commercially available insulin pen in 1985 and has continued to develop reusable/durable and prefilled insulin pens to meet different patient needs, through to the latest NovoPen 6 and NovoPen Echo Plus with SMART technology. Human-centered design is essential for delivering meaningful and practical solutions for individuals with diabetes.

Enhancing Digital Empathy and Reimagining the Telehealth Experience

As telehealth is increasingly adopted across all care settings, it is important to understand how clinicians can adapt and respond to patient needs. Drawing from experiences of a virtual primary care physician and a patient advocate, this Perspectives editorial provides additional insights beyonds the telehealth basics for establishing digital empathy and a remote therapeutic connection.

Shared Decision Making in Health Care: Theoretical Perspectives for Why It Works and For Whom

Applying both theoretical perspectives and empirical evidence, we address 2 key questions regarding shared decision making (SDM): 1) When should SDM be more patient driven, and when should it be more provider driven? and 2) Should health care providers match their SDM style/strategy to patient needs and preferences? Self-determination theory, for example, posits a distinction between autonomy and independence. A patient may autonomously seek their health care provider’s input and guidance, perhaps due to low perceived competence, low coping resources, or high emotional arousal. Given their need state, they may autonomously require nonindependence. In this case, it may be more patient centered and need supportive to provide more provider-driven care. We discuss how other patient characteristics such as personality attributes, motivational state, and the course of illness and other parameters such as time available for an encounter may inform optimal provider decision-making style and strategy. We conclude that for some types of patients and clinical circumstances, a more provider-driven approach to decision making may be more practical, ethical, and efficacious. Thus, while all decision making should be patient centered (i.e., it should consider patient needs and preferences), it does not always have to be patient driven. We propose a flexible model of SDM whereby practitioners are encouraged to tailor their decision making behaviors to patient needs, preferences, and other attributes. Studies are needed to test whether matching decision-making behavior based on patient states and traits (i.e., achieving concordance) is more effective than simply providing all patients with the same type of decision making, which could be tested using matching/mismatching designs.