Intensive Care Unit Diaries, Part 2: Impact of Diaries and Follow-up Consultation on Post–Intensive Care Syndrome

Field: Health Professions (Health Sciences)

Post–intensive care syndrome (PICS) affects 25% to 50% of critically ill patients. Common associated problems include physical, cognitive, and psychosocial impairments that affect quality of life.1,2 As discussed in “Intensive Care Unit Diaries, Part 1: Constructing Illness Narratives to Promote Recovery After Critical Illness,”3 diaries are an emerging psychosocial intervention to help patients understand and fill in memory gaps, diminish effects of real or imagined intrusive memories, and adjust expectations for recovery. Follow-up consultation, another intervention to manage PICS, assists patients and their relatives in understanding short-and long-term sequelae of the critical illness that may affect return to work or previous level of function. Patients may also undergo further evaluation and obtain referrals and resources for rehabilitation.4-6 Support in receiving and understanding content in intensive care unit (ICU) diaries is sometimes provided in follow-up consultation. The PICO question (population/problem, intervention, comparator, outcome) for this synthesis wasThe Cumulative Index to Nursing and Allied Health Literature (CINAHL) and PubMed were searched with key words ICU, critical care, post-ICU syndrome, diaries, follow-up consultation, patients, and relatives. The search was limited to original research in the past 5 years that investigated the effect of diaries and/or follow-up consultation in reducing PTSD associated with the critical illness experience.The second aim of this synthesis was to construct an evidence map. Only systematic reviews and/or meta-analyses that clearly reported search strategies, comprehensively searched at least 2 databases, used validated criteria to assess methods and potential bias, and explicitly focused on diaries or follow-up consultation were included.7Of 11 studies5,6,8-16 retrieved, 1 was a meta-analysis,15 2 were systematic reviews/meta-analyses,6,8 2 were systematic reviews,11,16 3 were randomized controlled trials (RCTs),5,9,10 1 was observational,13 and 2 were descriptive.12,14 Five studies were focused on diaries, 2 were focused on follow-up consultation, and 4 addressed mixed interventions (diaries/follow-up). Outcomes were assessed at variable times (1, 2, 3, 6,12, 14, 24, or 36 months).Diary interventions used guidelines similar to those used in the qualitative studies reported in Part 1.3 The effectiveness of diaries was mixed, with improved, worsened, or no change in anxiety, depression, or PTSD but improved outcomes for health-related quality of life (HRQoL8; see Table). In 1 RCT, diary plus psychoeducation about common ICU procedures/experiences/symptoms and follow-up resources improved depression and PTSD.10Follow-up consultation was individual or group-based; via health care or lay personnel by phone, online, at-home or clinic visits; or multicomponent interventions with diaries. Intensity varied from 1 to 3 consultations between 1 and 12 months.5,6,13-16 In 1 follow-up clinic, patients underwent a comprehensive diagnostic workup followed by an interdisciplinary family care planning conference.13 In another follow-up, survivors were given information about what did and did not happen during their ICU stay14,16 and visited the ICU.5,15,16 A “Life After ICU” pamphlet and photographs from the ICU stay were used in 1 consultation to help patients construct a coherent ICU illness narrative.5 Effectiveness of follow-up consultation was mixed, with improved, worsened, or no change in anxiety, depression, PTSD, physical/cognitive function, and HRQoL outcomes (see Table). However, follow-up consultation was associated with improved depression and PTSD outcomes in women with ICU stays longer than 4 days.15,16Evidence maps are emerging as a new method of summarizing the strength of an intervention’s effectiveness. In these maps, benefits and harms associated with an intervention for various conditions may be summarized, or head-to-head intervention comparisons (comparative effectiveness research) are made—both from broad-based perspectives.7,17-19 Evidence maps assist researchers and clinicians in finding promising areas for treatment and prioritizing future areas of research.7 The Figure provides the evidence map constructed from the strongest systematic review/meta-analysis for ICU diaries and follow-up consultation in this synthesis. Levels of confidence were assessed by degree of bias for each outcome7; this analysis revealed low-level evidence thatIntervention effectiveness may be related to embedded components of trauma-focused cognitive-behavioral therapy (eg, emotionally engaging with and processing trauma memory, organizing trauma narrative, cognitive restructuring) as prolonged exposure to underlying traumas reduces anxiety and PTSD.20 Patients’ exposure to the trauma of the critical illness experience was offered through information and discussion, photographs, and visits to the ICU. As women may be at higher risk for trauma-related psychological problems after critical illness,21 follow-up that included information/venting, an ICU visit, and tailored referrals (eg, psychiatrist, pain clinic) may have had greater effect on women’s depression and PTSD outcomes than on men’s.Both ICU diaries and follow-up consultation are emerging interventions targeted to PICS that warrant further development and systematic research. Effectiveness of these interventions on primary, secondary, and global outcomes was found, albeit with low-level evidence. As clinicians test these promising interventions, the following characteristics of the innovations22 should be considered.Appropriateness refers to the perceived fit, relevance, or compatibility of a new treatment or practice with the needs of consumers, providers, or settings.22 Both ICU diaries and follow-up consultation are suitable psychosocial interventions for patients with stays longer than 3 days, and/or mechanical ventilation or delirium for more than 48 hours, as these illness characteristics are associated with post-ICU psychological problems.3 Hatch et al23 reported that the prevalence of anxiety, depression, and PTSD was 12% to 46% among ICU survivors 3 to 12 months after discharge, with co-occurrence of 2 symptoms as high as 65%. Thus, nurses need to educate patients and relatives on PICS risk factors before discharge so they can better recognize symptoms and seek timely assistance.12To further select patients for diary initiation, nurses can use inclusion/exclusion criteria outlined in Part 1 (Table 3).3 Validated risk assessment tools may guide selection of patients for follow-up consultation. These tools screen for PTSD (Post-Traumatic Stress Syndrome-14)24 and assess patient-perceived frequency of cognitive, psychological, and physical symptoms (Healthy Aging Brain Monitor)25 or perceptions of recovery from a holistic perspective (Recovery After Intensive Care).26 Critical care nurses can test these tools after ICU transfer and in primary care to facilitate appropriate referrals that address the unique needs of each survivor (ie, psychiatric care, trauma-focused cognitive-behavioral therapy, rehabilitation).16Acceptability, the fit or agreeableness of a new treatment or practice with stakeholders,22 appears moderately high for both interventions. More than half of patients in 1 RCT read their diary 3 to 5 times in the first 90 days after discharge.10 Petersson et al12 reported that 44% of patients read the diary several times, and 60% believed that their diary was easy to understand and complemented other memories that increased understanding of their ICU stay. But as reported in Part 1,3 20% of patients/relatives did not desire a diary, indicating that diaries should be shredded for those who do not express interest.Diaries were also accepted with positive attitudes among relatives, nurses, physicians, and allied health professionals.10 Many nurses view ICU diaries as a holistic, humanizing intervention. At the same time, diaries have been considered a low-priority task by others.3 To further explore acceptability of diaries, teams might use appreciative inquiry to discover and reimagine how this narrative intervention—as an act of caring to humanize and personalize care and promote healing—fits with their dedication to provide patient-and-family-centered care. As Dr Margarete Sandelowski advocated in her article, “We Are the Stories We Tell—Narrative Knowing in Nursing Practice,” narrative skills can “help nurses recognize what is essentially human in health care.”27For follow-up consultation, acceptability was reflected in high patient attendance at 2 months (95%), declining to 71% and 59% at 6 months and 12 months, respectively.14 In another study, 66% of patients came for follow-up (48% for > 2 visits).17 Most patients rated visits as valuable in helping them adjust and gain a better understanding of what happened.14 Thus, information provided during follow-up is critical to assist patients/relatives in making realistic goals and timeframes for recovery. In another study, reasons for lack of participation included lack of energy, personal or relative’s illness, no perceived need, or transportation issues.5Feasibility is the extent to which the new treatment or practice can be used successfully in the intended setting.22 Perception of burden for ICU diaries was low among relatives, nurses, physicians, and allied health professionals.10 However, in Part 1,3 writing diary entries challenged nurses, although they learned how to personalize them over time. Thus, for successful implementation, nurses need education and practice on writing therapeutic diaries. Teams also need to consider how to incorporate and make time for diary writing alongside other acute care measures. Operationalization into practice will be aided if teams can articulate their value of this narrative intervention to the healing and recovery of their patients and relatives.With follow-up consultation, various models exist that can be tailored to individual health care systems. Initiating rehabilitation early in the post-ICU recovery phase may promote the continuum of care into primary care.16 However, access may be an issue, as widespread awareness and understanding of PICS and the resulting need for follow-up care may be limited.13 Patient/family education on follow-up care is also essential, especially among those with multiple psychological risk factors for PICS. Other pragmatic issues such as providing services to overcome transportation barriers may also increase success in the reach of this intervention to those most in need. Finally, more research is needed to investigate if post-ICU follow-up improves outcomes and thus improves health care utilization patterns (ie, reduced emergency department visits and readmissions) and costs of care.13More research that evaluates the effectiveness of diary and follow-up interventions on primary, secondary, and global health outcomes of patients and relatives is needed. These outcome studies can be augmented by quality improvement initiatives that assess acceptability and feasibility so that potential health effects can be realized when these emerging interventions are implemented in clinical practice.