Date of Award

2020

Degree Type

Dissertation

Degree Name

Doctor of Philosophy in Biological and Environmental Sciences

Department

Nutrition and Food Sciences

First Advisor

Ingrid E. Lofgren

Abstract

Parkinson’s disease (PD) is an incurable, neurodegenerative movement disorder, impacting nearly one million Americans. By 2030 the number of people with PD (PwPD) is expected to double and with this growing population, informal caregiver responsibility will also increase. Nutritional status worsens as PD progresses, which impacts cognition, body composition, ability to perform activities of daily living (ADL) and quality of life (QOL), and increases caregiver burden. Nutritional screening and intervention for PwPD can improve health outcomes, but are often excluded from PD treatment plans.

Given the negative impact of PD on mobility and increased caregiver burden, digital technology could improve access to health care services for PwPD and their caregivers, making them excellent candidates for digital health. Digital health services (i.e. wearable devices, videoconferencing, phone apps) are used in PD management across many health disciplines, but have not been implemented for nutritional management of PD. Understanding how nutritional status changes overtime for PwPD, and including PwPD and their caregivers in the formative stage is critical to developing effective digital health services. The aim of this body of research is to: 1) describe how the nutrition status of PwPD changes overtime, 2) describe the diet quality and self-reported nutrition concerns of PwPD and their informal caregivers, 3) collect formative data around digital health to manage nutrition for PwPD and their caregivers through dyadic interviewing.

The first chapter focuses on tracking the nutritional status of eight PwPD over four years and examines how disease sequelae, conditions that result from PD, may influence nutritional status. Findings reveal that the majority of PwPD were either at “possible-” or “at nutrition-” risk throughout the four years. There was a modest decrease in weight and body mass index. Findings suggest that PwPD can benefit from ongoing nutrition screening throughout the course of PD.

Chapter two evaluates the diet quality via Healthy Eating Index (HEI)- 2015 scores and self-reported nutrition concerns identified from qualitative interviews of twenty PwPD and their informal caregivers. This chapter also explores if a consistent pattern existed between nutrition concerns coded and diet quality scores of PwPD and caregivers. Mean HEI-2015 scores of PwPD and caregivers translate to an F letter grade and both PwPD and caregivers have intake inconsistent with the Dietary Guidelines for Americans. Participants also have low HEI-2015 component scores for whole grains, fatty acid ratios, and greens & beans. Qualitative themes specifically around dietary concerns related to PD sequelae include: change in appetite, amount eaten and/or weight, gastrointestinal issues, food-medication management, chewing/swallowing issues, change in taste/smell. No consistent pattern between HEI-2015 scores and self-reported nutrition concerns were detected. Findings suggest this population could benefit from nutrition services to better health outcomes.

Chapter 3 examines twenty PwPD’s and their caregivers’ perception and acceptance of digital health for managing nutrition and health through semi-structured dyadic interviews and questionnaires. This study also evaluates the participants’ level of digital competence. Phrases from interviews related to perceptions of digital health were sub-coded into three categories: Perceived Usefulness, Perceived Ease of Use and Awareness of Digital Health. Phrases related to Acceptance of digital were sub-coded into Accept, Neutral or Reject. An Average Dyadic Acceptance Rate for digital health was obtained through averaging the percent of phrases coded as Accept from each interview transcript. To integrate the two data sets, qualitative codes were transformed into variables and compared to digital competence scores. Twenty-five (62.5%) participants used the internet for at least 5 health-related purposes. The Average Dyadic Acceptance Rate was 54.4%. Dyads rejected digital health devices if they did not see the added benefit. The majority of phrases coded revealed participants found digital health useful, but hard to use, and about half of the phrases coded indicate dyads needed education about existing digital health mediums. Findings suggest dyads are accepting of technology but are not utilizing technology to its full potential. Perceiving technology as hard to use and digital competence scores, implies education is warranted prior to providing a digital nutrition service.

This body of research supports the need for nutrition screening and services among both PwPD and caregivers, who present with poor diet quality. Findings from this study also suggest more research is needed to figure out how to increase acceptability of digital health among this population. However, low diet quality scores, current technology usage, and perceived usefulness of digital health suggests technology may be a way to increase access to nutrition professionals among the PD community to promote better health outcomes.

Available for download on Thursday, April 29, 2021

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