Sarah Stewart1, Andrea Garcia Guillen2, William J Taylor3, Angelo Gaffo4, Julia Slark5, Merryn Gott6, Nicola Dalbeth7. 1. Faculty of Medical and Health Sciences, The University of Auckland, Private Bag 92019, Auckland, 1142, New Zealand. Electronic address: sarah.stewart@auckland.ac.nz. 2. Faculty of Medical and Health Sciences, The University of Auckland, Private Bag 92019, Auckland, 1142, New Zealand. Electronic address: AGarciaGui@santpau.cat. 3. Department of Medicine, University of Otago, PO Box 7343, Wellington South 6242, New Zealand. Electronic address: William.Taylor@otago.ac.nz. 4. School of Medicine, University of Alabama at Birmingham, 1720 2nd Ave South, Birmingham, AL 35294, USA. Electronic address: agaffo@uabmc.edu. 5. Faculty of Medical and Health Sciences, The University of Auckland, Private Bag 92019, Auckland, 1142, New Zealand. Electronic address: j.slark@auckland.ac.nz. 6. Faculty of Medical and Health Sciences, The University of Auckland, Private Bag 92019, Auckland, 1142, New Zealand. Electronic address: m.gott@auckland.ac.nz. 7. Faculty of Medical and Health Sciences, The University of Auckland, Private Bag 92019, Auckland, 1142, New Zealand. Electronic address: n.dalbeth@auckland.ac.nz.
Abstract
AIMS: Gout flares are an important concern for people with gout and an understanding of patients' experiences with gout flares is central in developing meaningful outcome measures for clinical trials. This study aimed to systematically review and thematically synthesize the qualitative literature reporting the patient experience of gout flares, to inform the development of flare-specific outcome measures. METHODS: MEDLINE, EMBASE, CINAHL Plus and PsycINFO electronic databases were searched in October 2019 to identify original qualitative research articles reporting on the patient experience of gout flares. Methodological quality of all included papers was assessed using the Critical Appraisal Skills Program (CASP) tool. Following data extraction, coding and synthesis was undertaken using reflexive thematic analysis. RESULTS: Sixteen papers reporting the patient experience of gout flares were included. The majority of CASP criteria were met by most studies, indicating good methodological quality. Four predominant and overlapping themes were identified from the thematic analysis: gout flare characteristics (pain, swelling, location, duration and frequency); impact on function and activities of daily living (walking, housework and yard work, self-care, exercise and sports, driving, sleep); effects on social and family life (social participation, inability to plan, employment, dependency, relationships, intimacy); and psychological impact (boredom, irritability, fear, shame and embarrassment, isolation, financial worry, depression and anxiety). CONCLUSIONS: Gout flares impact many aspects of patients' lives, including physical and psychological and social and family life. The patient experience of gout flares goes beyond what is routinely measured in research settings. Measurement and reporting methods that capture these aspects of patients' experiences with gout flares would provide more meaningful outcome measures in clinical trials of flare prevention.
AIMS: Gout flares are an important concern for people with gout and an understanding of patients' experiences with gout flares is central in developing meaningful outcome measures for clinical trials. This study aimed to systematically review and thematically synthesize the qualitative literature reporting the patient experience of gout flares, to inform the development of flare-specific outcome measures. METHODS: MEDLINE, EMBASE, CINAHL Plus and PsycINFO electronic databases were searched in October 2019 to identify original qualitative research articles reporting on the patient experience of gout flares. Methodological quality of all included papers was assessed using the Critical Appraisal Skills Program (CASP) tool. Following data extraction, coding and synthesis was undertaken using reflexive thematic analysis. RESULTS: Sixteen papers reporting the patient experience of gout flares were included. The majority of CASP criteria were met by most studies, indicating good methodological quality. Four predominant and overlapping themes were identified from the thematic analysis: gout flare characteristics (pain, swelling, location, duration and frequency); impact on function and activities of daily living (walking, housework and yard work, self-care, exercise and sports, driving, sleep); effects on social and family life (social participation, inability to plan, employment, dependency, relationships, intimacy); and psychological impact (boredom, irritability, fear, shame and embarrassment, isolation, financial worry, depression and anxiety). CONCLUSIONS:Gout flares impact many aspects of patients' lives, including physical and psychological and social and family life. The patient experience of gout flares goes beyond what is routinely measured in research settings. Measurement and reporting methods that capture these aspects of patients' experiences with gout flares would provide more meaningful outcome measures in clinical trials of flare prevention.
Authors: Alyssa Howren; Eric C Sayre; Hyon K Choi; J Antonio Avina-Zubieta; Kam Shojania; Jamie Y Park; Mary A De Vera Journal: BMC Rheumatol Date: 2022-10-03