title: Reported burden on informal caregivers of ICU survivors: a literature review.
abstract: BACKGROUND
  Critical illness and the problems faced after ICU discharge do not only affect the patient, it also negatively impacts patients' informal caregivers. There is no review which summarizes all types of burden reported in informal caregivers of ICU survivors. It is important that the burdens these informal caregivers suffer are systematically assessed so the caregivers can receive the professional care they need. We aimed to provide a complete overview of the types of burdens reported in informal caregivers of adult ICU survivors, to make recommendations on which burdens should be assessed in this population, and which tools should be used to assess them.
  
  
  METHODS
  We performed a systematic search in PubMed and CINAHL from database inception until June 2014. All articles reporting on burdens in informal caregivers of adult ICU survivors were included. Two independent reviewers used a standardized form to extract characteristics of informal caregivers, types of burdens and instruments used to assess these burdens. The quality of the included studies was assessed using the Newcastle-Ottawa and the PEDro scales.
  
  
  RESULTS
  The search yielded 2704 articles, of which we included 28 in our review. The most commonly reported outcomes were psychosocial burden. Six months after ICU discharge, the prevalence of anxiety was between 15% and 24%, depression between 4.7% and 36.4% and post-traumatic stress disorder (PTSD) between 35% and 57.1%. Loss of employment, financial burden, lifestyle interference and low health-related quality of life (HRQoL) were also frequently reported. The most commonly used tools were the Hospital Anxiety and Depression Scale (HADS), Centre for Epidemiological Studies-Depression questionnaire, and Impact of Event Scale (IES). The quality of observational studies was low and of randomized studies moderate to fair.
  
  
  CONCLUSIONS
  Informal caregivers of ICU survivors suffer a substantial variety of burdens. Although the quality of the included studies was poor, there is evidence that burden in the psychosocial field is most prevalent. We suggest screening informal caregivers of ICU survivors for anxiety, depression, PTSD, and HRQoL using respectively the HADS, IES and Short Form 36 and recommend a follow-up period of at least 6 months.
authors.affiliation: Department of Medical Informatics, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands. i.vanbeusekom@amc.uva.nl.|National Intensive Care Evaluation, Amsterdam, The Netherlands. i.vanbeusekom@amc.uva.nl.
authors.forename: Ilse
authors.initials: I
authors.lastname: van Beusekom
authors.affiliation: Department of Medical Informatics, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands.|National Intensive Care Evaluation, Amsterdam, The Netherlands.
authors.forename: Ferishta
authors.initials: F
authors.lastname: Bakhshi-Raiez
authors.affiliation: Department of Medical Informatics, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands.|National Intensive Care Evaluation, Amsterdam, The Netherlands.
authors.forename: Nicolette F
authors.initials: NF
authors.lastname: de Keizer
authors.affiliation: National Intensive Care Evaluation, Amsterdam, The Netherlands.|Department of Intensive Care Medicine, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands.
authors.forename: Dave A
authors.initials: DA
authors.lastname: Dongelmans
authors.affiliation: Department of Rehabilitation, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands.|Amsterdam School of Health Professions, University of Applied Sciences, Amsterdam, The Netherlands.
authors.forename: Marike
authors.initials: M
authors.lastname: van der Schaaf
mesh_terms: D001007:Anxiety / Q000209:etiology / Q000523:psychology; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D003863:Depression / Q000209:etiology / Q000523:psychology; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007362:Intensive Care Units; D008297:Male; D005791:Patient Care / Q000523:psychology*; D015995:Prevalence; D011788:Quality of Life / Q000523:psychology*; D013313:Stress Disorders, Post-Traumatic / Q000209:etiology / Q000523:psychology; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology