TY - JOUR
T1 - The impact of necrotizing soft tissue infections on the lives of survivors
T2 - a qualitative study
AU - Suijker, Jaco
AU - Stoop, Matthea
AU - Meij-de Vries, Annebeth
AU - Pijpe, Anouk
AU - Boekelaar, Anita
AU - Egberts, Marthe
AU - van Loey, Nancy
N1 - Funding Information: Financial and employment related consequences of the disease depended partly on pre-disease employment and financial status. In several patients, the impact of the disease on financial security and employment was substantial (e.g., bankruptcy). Several were unable to return to work, whereas others got back to work within a few months. In those less fortunate, the consequences of the disease had an extensive impact on the patients and their families, with one expressing feeling guilty towards the children for this. Financial support from social security was deemed insufficient by those who were severely financially impacted. Publisher Copyright: © 2023, The Author(s).
PY - 2023/7
Y1 - 2023/7
N2 - Purpose: Necrotizing soft tissue infections (NSTI) are potentially lethal infections marked by local tissue destruction and systemic sepsis, which require aggressive treatment. Survivors often face a long recovery trajectory. This study was initiated to increase understanding of the long-term impact of NSTI on health related quality of life (HRQoL), and how care may be improved. Methods: Thematic analysis was applied to qualitative data from 25 NSTI-survivors obtained through two focus groups (n = 14) and semi-structured interviews (n = 11). Results: The median age of the participants was 49 years, 14 were female. The median time since diagnosis was 5 years. Initial misdiagnosis was common, causing delay to treatment. Survivors experienced long-term physical consequences (scarring, cognitive impairment, fatigue, sleeping problems, recurrent infections), psychological consequences (traumatic stress symptoms, fear of relapse, adjusting to an altered appearance, sexual issues) and social and relational consequences (changes in social contacts, a lack of understanding). The disease also had a major psychological impact on family members, as well as major financial impact in some. There was a strong desire to reflect on ‘mistakes’ in case of initial misdiagnosis. To improve care, patient and family centered care, smooth transitions after discharge, and the availability of understandable information were deemed important. Conclusion: This study reveals that NSTI have a large impact on physical and psychosocial wellbeing of survivors and their relatives. Except for a few differences (misdiagnosis, fear for re-infection and actual re-infection), the patient experience of patients with NSTI is largely similar to those of burn survivors. Thus, questionnaires to assess HRQoL in burn survivors may be used in future NSTI studies.
AB - Purpose: Necrotizing soft tissue infections (NSTI) are potentially lethal infections marked by local tissue destruction and systemic sepsis, which require aggressive treatment. Survivors often face a long recovery trajectory. This study was initiated to increase understanding of the long-term impact of NSTI on health related quality of life (HRQoL), and how care may be improved. Methods: Thematic analysis was applied to qualitative data from 25 NSTI-survivors obtained through two focus groups (n = 14) and semi-structured interviews (n = 11). Results: The median age of the participants was 49 years, 14 were female. The median time since diagnosis was 5 years. Initial misdiagnosis was common, causing delay to treatment. Survivors experienced long-term physical consequences (scarring, cognitive impairment, fatigue, sleeping problems, recurrent infections), psychological consequences (traumatic stress symptoms, fear of relapse, adjusting to an altered appearance, sexual issues) and social and relational consequences (changes in social contacts, a lack of understanding). The disease also had a major psychological impact on family members, as well as major financial impact in some. There was a strong desire to reflect on ‘mistakes’ in case of initial misdiagnosis. To improve care, patient and family centered care, smooth transitions after discharge, and the availability of understandable information were deemed important. Conclusion: This study reveals that NSTI have a large impact on physical and psychosocial wellbeing of survivors and their relatives. Except for a few differences (misdiagnosis, fear for re-infection and actual re-infection), the patient experience of patients with NSTI is largely similar to those of burn survivors. Thus, questionnaires to assess HRQoL in burn survivors may be used in future NSTI studies.
KW - NSTI
KW - Necrotizing fasciitis
KW - PICS
KW - Quality of life
UR - http://www.scopus.com/inward/record.url?scp=85148890125&partnerID=8YFLogxK
U2 - https://doi.org/10.1007/s11136-023-03371-8
DO - https://doi.org/10.1007/s11136-023-03371-8
M3 - Article
C2 - 36840905
SN - 0962-9343
VL - 32
SP - 2013
EP - 2024
JO - Quality of life research
JF - Quality of life research
IS - 7
ER -