Katherine Kellom

Attitudes and habits of highly humanistic physicians.

Purpose Humanism is fundamental to excellent patient care and is therefore an essential concept for physicians to teach to learners. However, the factors that help attending physicians to maintain their own humanistic attitudes over time are not well understood. The authors attempted to identify attitudes and habits that highly humanistic physicians perceive allow them to sustain their humanistic approach to patient care. Method In 2011, the authors polled internal medicine residents at the University of Pennsylvania to identify attending physicians who exemplified humanistic patient care. In this cross-sectional, qualitative study, the authors used a semistructured script to interview the identified attending physicians to determine attitudes and habits that they believed contribute to their sustenance of humanistic patient care. Results Attitudes for sustaining humanism in this cohort of humanistic physicians included humility, curiosity, and a desire to live up to a standard of behavior. Many of the physicians deliberately worked at maintaining their humanistic attitudes. Habits that humanistic physicians engaged in to sustain their humanism included self-reflection, connecting with patients, teaching and role modeling, and achieving work–life balance. Physicians believed that treating their patients humanistically serves to prevent burnout in themselves. Conclusions Identification of factors that highly humanistic attending physicians perceive help them to sustain a humanistic outlook over time may inform the design of programs to develop and sustain humanism in teaching faculty.

Comparing genetic counselor’s and patient’s perceptions of needs in prenatal chromosomal microarray testing

Chromosome microarray analysis is poised to take a significant place in the prenatal setting given its increased yield over standard karyotyping, but concerns regarding ethical and counseling challenges remain, especially associated with the risk of uncertain and incidental findings. Guidelines recommend patients receiving prenatal screening to undergo genetic counseling prior to testing, but little is known about womens specific pre‐testing and post‐testing informational needs, as well as their preference for return of various types of results.

Couple’s Narratives of Communion and Isolation Following Abnormal Prenatal Microarray Testing Results

In 2% to 3% of cases, prenatal microarray testing detects deletions and duplications in a fetus’ genome that are undetected by conventional cytogenetics. Many of these changes are associated with variable or uncertain symptomatology. Little is known about how couples experience uncertain results. This study analyzed 24 interviews with members of 12 heterosexual U.S. couples who received pathogenic or uncertain microarray prenatal testing results. Researchers used narrative analysis to examine couples’ understanding and incorporation of findings into decision making regarding pregnancy termination. Couples felt unprepared for these findings and frustrated because scant information was available to aid interpretation. Women sought information and made decisions, and men marginalized their distress to support their wives. A shift in voice from first to second person indicated attempts to normalize emotional responses by making the process “common” to all couples. Families pursuing highly sensitive prenatal testing may need expert guidance to support decision making.

LVAD-DT: Culture of Rescue and Liminal Experience in the Treatment of Heart Failure

The purpose of this article is to investigate how cultural meanings associated with the left ventricular assist device (LVAD) inform acceptance and experience of this innovative technology when it is used as a destination therapy. We conducted open-ended, semistructured interviews with family caregivers and patients who had undergone LVAD-DT procedures at six U.S. hospitals. A grounded theory approach was used for the analysis. Thirty-nine patients and 42 caregivers participated. Participants described a sense of obligation to undergo the procedure because of its promise for salvation. However, once the device was implanted, patients described being placed into a liminal state of being neither sick nor healthy, with no culturally scripted role. Consideration of end-of-life decisions was complicated by the uncertainties about how patients with LVADs die. Pre-implantation communications among patient, family, and clinicians should take into account the impact of the technology on meaning, identity, and patient experience.

Exploration, Development, and Validation of Patient-reported Outcomes in Antineutrophil Cytoplasmic Antibody-associated Vasculitis Using the OMERACT Process

Objective. Antineutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV) is a group of linked multisystem life- and organ-threatening diseases. The Outcome Measures in Rheumatology (OMERACT) vasculitis working group has been at the forefront of outcome development in the field and has achieved OMERACT endorsement of a core set of outcomes for AAV. Patients with AAV report as important some manifestations of disease not routinely collected through physician-completed outcome tools; and they rate common manifestations differently from investigators. The core set includes the domain of patient-reported outcomes (PRO). However, PRO currently used in clinical trials of AAV do not fully characterize patients’ perspectives on their burden of disease. The OMERACT vasculitis working group is addressing the unmet needs for PRO in AAV. Methods. Current activities of the working group include (1) evaluating the feasibility and construct validity of instruments within the PROMIS (Patient-Reported Outcome Measurement Information System) to record components of the disease experience among patients with AAV; (2) creating a disease-specific PRO measure for AAV; and (3) applying The International Classification of Functioning, Disability and Health to examine the scope of outcome measures used in AAV. Results. The working group has developed a comprehensive research strategy, organized an investigative team, included patient research partners, obtained peer-reviewed funding, and is using a considerable research infrastructure to complete these interrelated projects to develop evidence-based validated outcome instruments that meet the OMERACT filter of truth, discrimination, and feasibility. Conclusion. The OMERACT vasculitis working group is on schedule to achieve its goals of developing validated PRO for use in clinical trials of AAV.

Perceptions of High-Risk Patients and Their Providers on the Patient-Centered Medical Home

To explore perceptions of high-risk patients and their practice staff on the patient-centered medical home, we conducted a multisite qualitative study with chronically ill, low-income patients and their primary care practice staff (N = 51). There were 3 key findings. Both patients and staff described a trade-off: timely care from an unfamiliar provider versus delayed access to their personal physician. Staff were enthusiastic about enhancing access through strategies such as online communication, yet high-risk patients viewed these as access barriers. Practices lacked capacity to manage high-risk patients and therefore frequently referred them to the emergency room.

A tale of four practices

Purpose The Patient-Centered Medical Home (PCMH) has become a dominant model of primary care re-design. This transformation presents a challenge to many care delivery organizations. The purpose of this paper is to describe attributes shaping successful and unsuccessful practice transformation within four medical practice groups. Design/methodology/approach As part of a larger study of 25 practices transitioning into a PCMH, the current study focused on diabetes care and identified high- and low-improvement medical practices in terms of quantitative patient measures of glycosylated hemoglobin and qualitative assessments of practice performance. A subset of the top two high-improvement and bottom two low-improvement practices were identified as comparison groups. Semi-structured interviews were conducted with diverse personnel at these practices to investigate their experiences with practice transformation and data were analyzed using analytic induction. Findings Results show a variety of key attributes facilitating more successful PCMH transformation, such as empanelment, shared goals and regular meetings, and a clear understanding of PCMH transformation purposes, goals, and benefits, providing care/case management services, and facilitating patient reminders. Several barriers also exist to successful transformation, such as low levels of resources to handle financial expense, lack of understanding PCMH transformation purposes, goals, and benefits, inadequate training and management of technology, and low team cohesion. Originality/value Few studies qualitatively compare and contrast high and low performing practices to illuminate the experience of practice transformation. These findings highlight the experience of organizational members and their challenges in practice transformation while providing quality diabetes care.

Health-related quality of life in ANCA-associated vasculitis and item generation for a disease-specific patient-reported outcome measure

Objective The antineutrophil cytoplasmic antibody (ANCA)-associated vasculitides (AAVs) are multisystem diseases of the small blood vessels. Patients experience irreversible damage and psychological effects from AAV and its treatment. An international collaboration was created to investigate the impact of AAV on health-related quality of life (HRQoL), and develop a disease-specific patient-reported outcome measure to assess outcomes of importance to patients. Methods Patients with AAV from the UK, USA, and Canada were interviewed to identify salient aspects of HRQoL affected by AAV. The study was overseen by a steering committee including four patient research partners. Purposive sampling of interviewees ensured representation of a range of disease manifestations and demographics. Inductive analysis was used to identify themes of importance to patients; these were further confirmed by a free-listing exercise in the US. Individual themes were recast into candidate items, which were scrutinized by patients, piloted through cognitive interviews and received a linguistic and translatability evaluation. Results Fifty interviews, conducted to saturation, with patients from the UK, USA, and Canada, identified 55 individual themes of interest within seven broad domains: general health perceptions, impact on function, psychological perceptions, social perceptions, social contact, social role, and symptoms. Individual themes were constructed into >100 candidate questionnaire items, which were then reduced and refined to 35 candidate items. Conclusion This is the largest international qualitative analysis of HRQoL in AAV to date, and the results have underpinned the development of 35 candidate items for a disease-specific, patient-reported outcome questionnaire.

Patient perceptions of glucocorticoids in anti-neutrophil cytoplasmic antibody-associated vasculitis

Granulomatosis with polyangiitis (GPA), microscopic polyangiitis (MPA), and eosinophilic granulomatosis with polyangiitis (EGPA) are multisystem diseases of small blood vessels, collectively known as the anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitides (AAV). This study explores the patient’s perspective on the use of glucocorticoids, which are still a mainstay of treatment in AAV. Patients with AAV from the UK, USA, and Canada were interviewed, using purposive sampling to include a range of disease manifestations and demographics. The project steering committee, including patient partners, designed the interview prompts and cues about AAV, its treatment, and impact on health-related quality of life. Interviews were transcribed and analysed to establish themes grounded in the data. A treatment-related code was used to focus analysis of salient themes related to glucocorticoid therapy. Fifty interviews were conducted. Individual themes related to therapy with glucocorticoids emerged from the data and were analysed. Three overarching themes emerged: (1) Glucocorticoids are effective at the time of diagnosis and during relapse, and withdrawal can potentiate a flare, (2) glucocorticoids are associated with salient emotional, physical, and social effects (depression, anxiety, irritation, weight gain and change in appearance, diabetes mellitus, effect on family and work); and (3) patient perceptions of balancing the risks and benefits of glucocorticoids. Patients identified the positive aspects of treatment with glucocorticoids; they are fast-acting and effective, but, they voiced concerns about adverse effects and the uncertainty of the dose-reduction process. These results may be informative in the development of novel glucocorticoid-sparing regimens.

Correction to: A Mixed Methods Evaluation of Early Childhood Abuse Prevention Within Evidence-Based Home Visiting Programs

The article “A Mixed Methods Evaluation of Early Childhood Abuse Prevention Within Evidence-Based Home Visiting Programs”, written by M. Matone, K. Kellom, H. Griffis, W. Quarshie, J. Faerber, P. Gierlach, J. Whittaker, D. M. Rubin and P. F. Cronholm, was originally published electronically on the publisher’s internet portal (currently SpringerLink) on 31 May 2018 without open access. With the author(s)’ decision to opt for Open Choice the copyright of the article changed on 27 July 2018 to