Rhoads Research Lecture—Reflections from a clinician scientist: The power of patient voice

Winkler, Marion F.

doi:10.1002/jpen.2433

Cited by 3 publications

(3 citation statements)

References 41 publications

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“…Covid-19 would appear to be just one of many difficulties that have arisen and is therefore experienced as a challenge that gives them various opportunities to react. The power of accepting new limiting situation, facing them with determination and fortitude also resonates with results of qualitative health research on impairment and chronic illness (Winkler, 2022) that indicate as a dominant theme in these contexts acceptance of a new way of life, in view of a new normalcy.…”

Section: Discussionmentioning

confidence: 66%

Stemming the “ageism pandemic”: A qualitative inquiry with older adults in residential care facilities during the Covid-19 outbreak

Bellanova,

Romaioli,

Contarello

2023

J Health Psychol

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The Covid-19 pandemic added to collective concerns, making health risks salient especially for the older population. The health emergency exacerbated an already widespread negative representation of aging, and phenomena such as ageism. With the present qualitative inquiry, 21 episodic interviews were collected with the aim of understanding the experience of older adults in residential care facilities, exploring their ideas of aging and the viewpoints that helped them to respond to the pandemic successfully. A thematic analysis was conducted using NudIst software. The results show that participants described multiple personal and relational resources they used to cope with the pandemic, and they were able to express counter-narratives to the ideas of aging as coinciding with decline, and of lockdown as a source of distress alone. The paper concludes with reflections on the relevance of research capable of challenging unhelpful dominant discourses and averting the risk of them turning into negative prophecies.

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Section: Discussionmentioning

confidence: 66%

Stemming the “ageism pandemic”: A qualitative inquiry with older adults in residential care facilities during the Covid-19 outbreak

Bellanova,

Romaioli,

Contarello

2023

J Health Psychol

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“…51 HPN-dependent adults desire a holistic approach to their healthcare with emotional support provided in addition to medical care and nutrition assessment. 37,52 The validated HPN PRO Questionnaire (HPN-PROQ) is a clinically relevant approach to identify and address lifestyle concerns of patients receiving HPN during a medical office or homecare visit. The HPN-PROQ includes 20 statements that address HPN therapy goals, education and training preparedness for self-care, health limitations caused by disease and HPN therapy, emotional coping, and three global QOL questions.…”

Section: Qolmentioning

confidence: 99%

“…The use of patient‐reported outcomes (PROs) is a clinically useful approach to monitor progression of disease or response to treatment as well as to improve clinician‐patient communication and expand the role of shared or informed decision making 51 . HPN‐dependent adults desire a holistic approach to their healthcare with emotional support provided in addition to medical care and nutrition assessment 37,52 . The validated HPN PRO Questionnaire (HPN‐PROQ) is a clinically relevant approach to identify and address lifestyle concerns of patients receiving HPN during a medical office or homecare visit.…”

Section: Qolmentioning

confidence: 99%

Epidemiology, survival, costs, and quality of life in adults with short bowel syndrome

Winkler

Tappenden

2023

Nut in Clin Prac

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Short bowel syndrome (SBS) is a rare disorder with known physical, psychosocial, and economic burdens and significant morbidity and mortality. Many individuals with SBS require long-term home parenteral nutrition (HPN). The incidence and prevalence of SBS is difficult to determine because it is often based on HPN usage and may not account for those who receive intravenous fluids or achieve enteral autonomy. The most common etiologies associated with SBS are Crohn's disease and mesenteric ischemia. Intestinal anatomy and remnant bowel length are prognostic for HPN dependency, and enteral autonomy confers a survival advantage. Health economic data confirm that PN-related costs are higher for hospitalizations than at home; yet significant healthcare resource utilization is necessary for successful HPN, and patients and families report substantial financial distress that impacts quality of life (QOL). An important advancement in QOL measurement is the validation of HPN-and SBS-specific QOL questionnaires. In addition to the known factors negatively impacting QOL, such as diarrhea, pain, nocturia, fatigue, depression, and narcotic dependency, research has shown that the volume and number of PN infusions per week is associated with QOL.Although traditional QOL measurements describe how underlying disease and therapy influence life, they do not assess how symptoms and functional limitations affect the QOL of patients and caregivers. Patient-centered measures and conversation focused on psychosocial issues helps patients with SBS and HPN dependency better cope with their disease and treatment. This article presents a brief overview of SBS, including epidemiology, survival, costs, and QOL.

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The ASPEN Rhoads Research Foundation: Supporting and advancing clinical nutrition research

Winkler,

Tappenden,

McMahon

et al. 2024

J Parenter Enteral Nutr

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The vision of the ASPEN Rhoads Research Foundation is to promote innovation and research discovery to improve nutrition care and health. The Foundation was launched in 1993, incorporated in 2002, and established as a nonprofit 501(c)(3) organization in 2007. On the occasion of American Society for Parenteral and Enteral Nutrition (ASPEN)'s 50th anniversary, this article examines the creation of the Foundation, the state of clinical nutrition research funding, the Foundation's philanthropic mission, and the return on investment of Foundation grant support. To date, 114 investigators have received 2.78 million dollars in funding. The article examines the success of ASPEN research programs and Foundation grant support in career development, leadership, and mentorship. It is important to document a historical account of the ASPEN Rhoads Research Foundation and encourage innovation and discovery and ongoing financial support.

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Rhoads Research Lecture—Reflections from a clinician scientist: The power of patient voice

Cited by 3 publications

References 41 publications

Stemming the “ageism pandemic”: A qualitative inquiry with older adults in residential care facilities during the Covid-19 outbreak

Stemming the “ageism pandemic”: A qualitative inquiry with older adults in residential care facilities during the Covid-19 outbreak

Epidemiology, survival, costs, and quality of life in adults with short bowel syndrome

The ASPEN Rhoads Research Foundation: Supporting and advancing clinical nutrition research

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