SEARCHSYSTEMATIC_REVIEWnephrology, pediatrics

systematic_review·nephrology, pediatrics, systematic review, clinical trial·PMC10611865

Development of a Conceptual Model for the Patient Experience of Focal Segmental Glomerulosclerosis (FSGS): A Qualitative Targeted Literature Review

Advances in Therapy · 9 authors, 3 centres

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TL;DR

This study conducted a systematic review and thematic analysis of qualitative literature and patient testimonials to develop a conceptual model of the adult and pediatric patient experience with FSGS.

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Key symptom domains identified included swelling (edema), fatigue, pain, weight changes, and sleep problems. Impact domains included emotional/psychological well-being, physical functioning, social functioning, and work/school. The model highlights the chronic, relapsing/remitting nature of FSGS and its association with anxiety, depression, and reduced daily activities. Limitations include the inclusion of studies on nephrotic syndrome generally, potential discrepancies in reported symptom saliency, and a focus on North American/English-language sources.

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systematic_review

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nephrology

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ORIGINAL PAPER

PMC10611865

Development of a Conceptual Model for the Patient Experience of Focal Segmental Glomerulosclerosis (FSGS): A Qualitative Targeted Literature Review

Advances in Therapy

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ABSTRACT

Abstract Introduction Focal segmental glomerulosclerosis (FSGS) is a leading cause of kidney disease and can progress to end stage kidney disease (ESKD). An overview of symptoms and impacts of the disease experienced will help inform the selection or development of fit-for-purpose clinical outcome assessments (COA) to be used in FSGS clinical trials. This study aimed to develop a conceptual model (CM) of the adult and pediatric patient experience of FSGS including disease signs/symptoms, treatment side-effects, and impact on functioning and wellbeing. Methods This study comprised a systematic review and thematic analysis of qualitative studies with adults and pediatric patients diagnosed with FSGS. Data sources were identified through an electronic database search of journal articles (Medline, Embase, PsycINFO; June 2021) and hand-searching of conference proceedings, patient advocacy group websites, and gray literature. Non-English articles were excluded. Identified data (patient/caregiver quotes, author summaries, and interpretations of patient experiences) were extracted from the articles. Extracted data were qualitatively analyzed aided by ATLAS.ti v7. Codes were applied to data and concepts (symptoms/impacts) were identified, named, and refined. A CM was developed by grouping related concepts into domains. Results In total, 12 sources were identified for analysis: 6 journal articles and 6 series of patient testimonials. Salient sign/symptom/side-effect domains included swelling/puffiness (edema), pain/aches/discomfort, fatigue, weight changes, skin problems, respiratory problems, and sleep problems. Salient impact domains included emotional/psychological wellbeing, physical functioning/activities of daily living, social functioning, and work/school. Conclusion Secondary analysis of published qualitative literature permitted development of a CM describing the adult and pediatric experience of FSGS. Concept elicitation interviews are recommended to refine the CM, confirm the salient/most bothersome concepts, and confirm the extent of impact on daily life. The refined CM will provide a useful tool to inform the selection, development, and/or amendment of COAs for use in future FSGS clinical trials. Supplementary Information The online version contains supplementary material available at 10.1007/s12325-023-02651-6. Keywords: Clinical outcomes assessments, Focal segmental glomerulosclerosis, Patient experience, Patient-reported outcomes, Qualitative

CITATION EXPORT

Natalie V J Aldhouse, Helen Kitchen, Tamara Al-Zubeidi et al.. Development of a Conceptual Model for the Patient Experience of Focal Segmental Glomerulosclerosis (FSGS): A Qualitative Targeted Literature Review. Advances in Therapy. (2023). https://doi.org/10.1007/s12325-023-02651-6

AUTHORS

9 · 3 CENTRES

Natalie V J Aldhouse, Helen Kitchen, Tamara Al-Zubeidi, Madeleine Thursfield, Randall Winnette, Sandi See Tai, Linda Zhu, Nicolas Garnier, Christine L Baker

1Clinical Outcomes Assessment, Clarivate, London, UK
2Pfizer Inc, New York, NY USA
3Pfizer Inc, Collegeville, PA USA

Natalie V J Aldhouse, Helen Kitchen, Tamara Al-Zubeidi et al.. Development of a Conceptual Model for the Patient Experience of Focal Segmental Glomerulosclerosis (FSGS): A Qualitative Targeted Literature Review. Advances in Therapy. (2023). https://doi.org/10.1007/s12325-023-02651-6