Provider Perceptions of Quality of Life, Neurocognition, Physical Well-being, and Psychosocial Health in Patients with Primary Immunodeficiency/Immune Dysregulation Conditions
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Both pediatric and adult patients with a primary immunodeficiency/immune dysregulation (PID/PIDR) diagnosis report inferior quality of life (QOL) and patient-reported outcomes (PROs) as compared with their healthy peers. Recognition of the negative impact on QOL and PROs provides an opportunity for clinicians to intervene with supportive measures. However, provider perceptions of PID/PIDR patients’ quality of life, physical well-being, psychosocial health and neurocognition, and access to supportive resources have yet to be systematically evaluated.
We report specialty providers’ perception of the QOL and psychosocial and physical well-being of their pediatric and adult patients with PID/PIDR through the utilization of an online survey assessing QOL and the impact of disease or its associated treatment on their physical well-being, mental health, social relationships, neurocognition, and work/school performance.
Clinicians trended towards believing adult PID/PIDR patients had worse overall QOL than children with PID/PIDR. Providers additionally identified their adult patients’ QOL to be more deleteriously affected by co-morbidities than their pediatric patients. Clinicians distinguished anxiety and social relationships as the psychosocial aspects most often affected by a complex immunological diagnosis in all patients. Of physical health considerations, energy, rather than mobility or pain, was perceived to be more negatively influenced by PID/PIDR in both adult and pediatric patients.
Knowledge of these clinician perceptions can affect communication of findings with patients, as well as ongoing management, and thus, it is important to understand these fully to improve healthcare delivery to, and clinical management of, these patients.
KeywordsPrimary immunodeficiency/immune dysregulation quality of life patient-reported outcomes provider perceptions
Clinical Immunology Society
Health-related quality of life
International Alliance of Primary Immunodeficiency Societies
Primary immunodeficiency/immune dysregulation
Quality of life
We thank the survey respondents and the Clinical Immunology Society and International Alliance of Primary Immunodeficiency Societies for facilitating this study.
Drs. Michniacki and Walkovich conceptualized and designed the study. Dr. Michniacki drafted the manuscript as well as analyzed/interpreted the study data. Dr. Abraham, Dr. Walkovich, Dr. Merz and Ms. Sturza assisted in editing the manuscript. Dr. Merz also assisted in constructing the online surveys. Ms. Sturza additionally provided statistical support.
Compliance with Ethical Standards
Conflict of Interest
The authors declare that they have no conflicts of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee (University of Michigan; HUM00148246) and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
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