Poster - #VH-46376 - Keywords: neurofibromatosis, self-care, self-management, psychosocial

Quantifying Self-Care among Adults with Neurofibromatosis I: Validation of a New Disease-Specific Measure

Diane Zelman, PhD, and Erica Leif, M.A., Alliant International University, San Francisco Bay Area and Robert Gore, PhD, Adena Regional Medical Center, Chillicothe, Ohio
Alliant International University

ABSTRACT:
Zelman, Diane C.; Alliant International University, California School of Professional Psychology; Leif, Erica B.; Alliant International University, California School of Professional Psychology; Gore, Robert; Adena Regional Medical Center, Chillicothe, Ohio
Funding: This research was funded by a contract award number 2023-04-001 from the Children’s Tumor Foundation awarded to Diane Zelman, PhD.
Disclosures: The authors have no relevant financial or non-financial disclosures
Title: Quantifying Self-Care among Adults with Neurofibromatosis I: Validation of a New Disease-Specific Measure
Purpose: Neurofibromatosis 1 (NF1) requires complex self-care, including symptom management, finding good healthcare, AND addressing health maintenance needs and psychological health. The Self-Care of Chronic Illness Inventory (SC-CII) is a widely-used “generic” measure of self-care among people with chronic illness that quantifies monitoring, management, and maintenance of chronic illness, and self-care confidence (Riegel et al., 2012). Riegel and colleagues have subsequently validated several disease-specific versions of the SC-CII to quantify self-care behaviors relating to specific health conditions (e.g., hypertension, diabetes, and coronary heart disease). There exists no self-care measure specific to NF1. The research objective was to create and validate a disease-specific patient-reported outcome measure to quantify self-care in people with NF1. An earlier study (Leif & Zelman, 2024) conducted interviews with 22 individuals with NF1 to establish a compendium of self-care requirements. These findings were used to create and validate a measure of self-care specific to adults with NF1.
Methods: Participants were 317 adult individuals with NF 1 recruited from the Neurofibromatosis Registry (age 18-80, 71.3% female, 86.4% Caucasian, 33.5% college-educated, 54.6% with Worst Pain > 4 on a 1-10 scale) who completed measures online. Sixty-eight candidate items were generated for the new self-care measure informed by Leif & Zelman (2024), self-care theory and the generic SCI-II. Each item described a form self-care scored on a 1-5 Likert frequency scale ranging from Never/Rarely to Very Often. Participants also completed the 20-item generic SC-CII (Riegel et al., 2018) and measures of pain, sleep, quality of medical care and quality of life.
Results: Several iterations of Confirmatory Factor Analysis (CFA) were carried out in which items were dropped at each step to improve fit statistics to establish a set of self-care domains corresponding to important self-care constructs. The final factor solution comprised six subscales (Medical Monitoring, Self-Monitoring, Engaging Social Support, Stress Management, and Self-Maintenance) and two additional subscales for those who report pain due to NF 1 (Pain personal-care Interventions and Pain Medication and Professional Interventions). The new disease-specific NF1 measure better met criteria for CFA relative to the generic SCI-II, and showed stronger relationships with key outcomes such as anxiety, depression, sleep, pain, autonomy and relatedness with the healthcare team. Among those with pain due to NF1, pairwise correlations show robust relationships between pain self-care, pain-related interference and factors such as perceived stigma, discrimination in medical settings, barriers in medical settings, anxiety, depression, and sleep problems.
Conclusion: This research was the first study to quantify disease self-care in NF 1 and is one of only a few studies to investigate pain management as an aspect of self-care in this disorder (e.g., Buono et al., 2024). Initial analyses show that the new measure is a stronger predictor of a number of outcomes relative to the generic self-care measure, the SCI. Subsequent research will establish the suitability of this measure for patients and clinicians and the relationship between self-care domains and medical outcomes.