Survivorship outcomes for critically ill patients in Australia and New Zealand: A scoping review.

INTRODUCTION: Impairments after critical illness, termed the post-intensive care syndrome, are an increasing focus of research in Australasia. However, this research is yet to be cohesively synthesised and/or summarised. OBJECTIVE: The aim of this scoping review was to explore patient outcomes of survivorship research, identify measures, methodologies, and designs, and explore the reported findings in Australasia. INCLUSION CRITERIA: Studies reporting outcomes for adult survivors of critical illness from Australia and New Zealand in the following domains: physical, functional, psychosocial, cognitive, health-related quality of life (HRQoL), discharge destination, health care use, return to work, and ongoing symptoms/complications of critical illness. METHODS: The Joanna Briggs Institute scoping review methodology framework was used. A protocol was published on the open science framework, and the search used Ovid MEDLINE, Scopus, ProQuest, and Google databases. Eligible studies were based on reports from Australia and New Zealand published in English between January 2000 and March 2022. RESULTS: There were 68 studies identified with a wide array of study aims, methodology, and designs. The most common study type was nonexperimental cohort studies (n = 17), followed by studies using secondary analyses of other study types (n = 13). HRQoL was the most common domain of recovery reported. Overall, the identified studies reported that impairments and activity restrictions were associated with reduced HRQoL and reduced functional status was prevalent in survivors of critical illness. About 25% of 6-month survivors reported some form of disability. Usually, by 6 to12 months after critical illness, impairments had improved. CONCLUSIONS: Reports of long-term outcomes for survivors of critical illness in Australia highlight that impairments and activity limitations are common and are associated with poor HRQoL. There was little New Zealand-specific research related to prevalence, impact, unmet needs, ongoing symptoms, complications from critical illness, and barriers to recovery.

Measuring memory: A survey of neuropsychological practice amongst New Zealand psychologists.

This study sought to explore patterns of memory assessment in neuropsychological practice within New Zealand (NZ), to compare it to that previously described in Europe, North America and Australia, and to consider the implications for neuropsychology training in NZ. 80 NZ-registered psychologists completed an online survey asking them how frequently they utilized 50 commonly used tests of memory. Participants were also asked about their main areas of specialty, work context and demographic information. Whilst participants appeared, broadly, to utilize a similar set of 'core' tests to their colleagues in Europe, Australia and North America, there were a number of tests and test domains that were rarely utilized by NZ psychologists, in contrast to overseas samples. Furthermore, several of the tests in common usage have been shown to have significant validity issues for use with an NZ population. Overall, this study suggests that most NZ psychologists employ a similar approach to memory assessment, typically relying upon a small number of well-known tests. This appears to contrast with a greater variability of practice shown in studies of European, North American and Australian psychologists and raises several interesting questions for the future development of neuropsychology in NZ.

Correction: Survivorship of Patients After Long Intensive Care Stay With Exploration and Experience in a New Zealand Cohort (SPLIT ENZ): Protocol for a Mixed Methods Study.

[This corrects the article DOI: 10.2196/35936.].

Survivorship of Patients After Long Intensive Care Stay With Exploration and Experience in a New Zealand Cohort (SPLIT ENZ): Protocol for a Mixed Methods Study.

BACKGROUND: Post Intensive Care Syndrome (PICS) was defined by the Society of Critical Care Medicine in 2012 with subsequent international research highlighting poor long-term outcomes; reduced quality of life; and impairments, for survivors of critical illness. To date, there has been no published research on the long-term outcomes of survivors of critical illness in New Zealand. OBJECTIVE: The aim of this study is to explore long-term outcomes after critical illness in New Zealand. The primary objectives are to describe and quantify symptoms and disability, explore possible risk factors, and to identify unmet needs in survivors of critical illness. METHODS: This will be a mixed methods study with 2 components. First, a prospective cohort study of approximately 100 participants with critical illness will be followed up at 1, 6, and 12 months after hospital discharge. The primary outcome will be disability assessed using the World Health Organization Disability Assessment Scale 2.0. Secondary outcomes will focus on mental health using the Hospital Anxiety and Depression Scale and the Impact of Events Scale-revised, cognitive function using the Montreal Cognitive Assessment (Montreal Cognitive Assessment-BLIND), and health-related quality of life using the European Quality of Life-Five Dimension-Five Level. The second element of the study will use qualitative grounded theory methods to explore participants experiences of recovery and highlight unmet needs. RESULTS: This study was approved by the New Zealand Northern A Health and Disability Ethics Committee on August 16, 2021 (21/NTA/107), and has been registered with the Australian New Zealand Clinical Trials Registry on October 5, 2021. SPLIT ENZ is due to start recruitment in early 2022, aiming to enroll 125 patients over 2 years. Data collection is estimated to be completed by 2024-2025 and will be published once all data are available for reporting. CONCLUSIONS: Although international research has identified the prevalence of PICS and the extent of disability in survivors of critical illness, there is no published research in New Zealand. Research in this field is particularly pressing in the context of COVID-19, an illness that may include PICS in its sequelae. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN1262100133588; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=382566&showOriginal=true&isReview=true. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/35936.

Psychological flexibility in mild traumatic brain injury: an evaluation of measures.

PRIMARY OBJECTIVE: In this study, we examined the psychometric properties of measures of psychological flexibility in a mild traumatic brain injury (mTBI) sample. METHOD AND PROCEDURES: Adults who sustained a mTBI (n = 112) completed the Acceptance and Action Questionnaire - Acquired Brain Injury reactive avoidance subscale (AAQ-ABI (RA). Exploratory factor analysis and Rasch analysis were conducted to evaluate the facture structure, dimensionality, and differential item functioning. Construct validity was determined by correlating the AAQ-ABI (RA) with the Acceptance and Action Questionnaire-Revised (AAQ-II) and Fear Avoidance after Traumatic Brain Injury (FAB-TBI). MAIN OUTCOME AND RESULTS: The AAQ-ABI (RA) was found to have strong internal consistency (Cronbach's α = 0.87). Consistent with previous findings, the AAQ-ABI (RA) had one distinct factor. Fit to the unidimensional Rasch model was adequate (χ2 (18) = 22.5, p = .21) with no evidence of differential item functioning across person factors examined. The AAQ-ABI (RA) also had expected relationships with theoretically relevant constructs. CONCLUSIONS: The AAQ-ABI (RA) appears to be a psychometrically sound measure of psychological flexibility in mTBI.

What are the long-term outcomes for New Zealand survivors of critical illness?

The COVID-19 pandemic has drawn considerable attention to the survival journey and recovery of patients post critical illness. A decade ago, the Society of Critical Care Medicine described the prolonged adverse health effects after a critical illness as the "post intensive care syndrome" (PICS). Evidence is emerging from Australia around the impact critical illness has on disability, mental health, cognitive function and health-related quality of life for patients this side of the world. For example, one study has shown that disability was highly prevalent in survivor's six-month post hospital discharge, with 50% having mild disability and 25% with moderate to severe disability. Currently it is unknown what the survival journey is like for patients in New Zealand; how we should best measure outcomes for our population; and how we should support Maori and Pasifika patients post critical illness. Research is needed in every aspect of PICS in New Zealand. In 2022, the much-anticipated Survivorship of Patients Post Long Intensive Care Stay, Exploration/Experience in a New Zealand Cohort (SPLIT ENZ) study will explore important aspects of recovery and long-term outcomes for New Zealand survivors of critical illness.

Factors Influencing the Use of Psychotropic Medication for Challenging Behaviour in the United Kingdom: A Q Method Investigation.

OBJECTIVES: The use of pharmacological interventions to manage challenging behaviour displayed by adults with intellectual disabilities remains controversial, with current clinical guidelines in the United Kingdom advocating the use of less invasive psychological interventions. This exploratory study aimed to discover what views and beliefs are held by a sample of NHS professionals who provided care and treatment to adults with learning disabilities, about the factors that are influential in the clinical decision-making process, surrounding the prescription of psychotropic medication, to manage challenging behaviour. METHODS: Q methodology was used to elucidate the factors considered influential in the clinical decision-making process, surrounding the prescription of medication to manage challenging behaviour. 55 participants from a range of services across the north-west of England performed a 104 statement Q-sort task. RESULTS: Principle component factor analysis with varimax rotation was performed on the 55 completed Q sorts. This revealed a four factor solution, accounting for 44% of the variance in the data. The factors were interpreted and discussed under the following headings: 'High-quality safe ethical practice', Risk is a rationale for reactive prescribing', 'Pragmatic management' and 'Contextual issues'. CONCLUSIONS: The study demonstrated that Q methodology is a useful tool for identifying subjective viewpoints held by a range of professionals, with regard to the factors that influence the clinical decision-making process surrounding the prescription of medication. The study suggests that services need to identify the wider contextual factors, which are barriers, to the use of less invasive psychological interventions.

I Collect Therefore I am--Autonoetic Consciousness and Hoarding in Asperger Syndrome.

UNLABELLED: A growing number of studies have highlighted impairments in the ability of individuals with autism spectrum disorders to recall specific, personally experienced material. These difficulties have been related to underlying problems with autonoetic consciousness, namely the subjective awareness of one's own existence in subjective time. The current paper describes the manifestation of these difficulties in three individuals diagnosed with Asperger syndrome. For the people described, lifelong collecting and hoarding behaviours appeared to serve the function of constituting and maintaining aspects of their sense of self, particularly the sense of continuity and agency over time. On the basis of this clinical information and previous research into self-related processes in people with autism spectrum disorders, an initial model of collecting and hoarding behaviours amongst individuals with Asperger syndrome was formulated. The implications of this formulation for both clinical practice and future research are discussed. KEY PRACTITIONER MESSAGE: People with Asperger syndrome can have problems in developing a functional sense of self. Collecting and hoarding behaviour by people with Asperger syndrome may reflect such underlying difficulties in their sense of self rather than being symptoms of comorbid mental illness. Interventions need to take account of the function of such behaviours rather than solely regarding them as discrete pathological signs.

Anxiety in Asperger's syndrome: Assessment in real time.

Anxiety is a major problem for many people with Asperger's syndrome who may have qualitatively different fears from a non-Asperger's syndrome population. Research has relied on measures developed for non-Asperger's syndrome populations that require reporting past experiences of anxiety, which may confound assessment in people with Asperger's syndrome due to problems with autobiographical memory as are often reported in this group.Experience sampling methodology was used to record real-time everyday experiences in 20 adults with Asperger's syndrome and 20 neurotypical adults. Within-subject analysis was used to explore the phenomenology of thoughts occurring in people with Asperger's syndrome when they were anxious. Comparisons were made with the group that did not have Asperger's syndrome. The Asperger's syndrome group were significantly more anxious than the comparison group. Factors associated with feelings of anxiety in the Asperger's syndrome group were high levels of self-focus, worries about everyday events and periods of rumination lasting over 10 min. People in the Asperger's syndrome group also had a tendency to think in the image form, but this was not associated with feelings of anxiety. The results are discussed with reference to psychological models of Asperger's syndrome, cognitive models of anxiety and implications for psychological therapy for this group.

Asperger through the looking glass: an exploratory study of self-understanding in people with Asperger's syndrome.

Hobson (Autism and the development of mind. Lawrence Erlbaum, Hove, UK 1993) has proposed that the cognitive and linguistic disabilities that characterise autism result from abnormalities in inter-subjective engagement during infancy, which in turn results in impaired reflective self-awareness. The aim of the present study was to test Hobson's hypothesis by examining self-understanding in Asperger's syndrome (AS) using Damon and Hart's (Self-understanding in childhood and adolescence. Cambridge University Press, Cambridge, 1988) model of self-concept. Ten participants with Asperger's syndrome were compared with ten non AS controls using the Self-understanding Interview (Damon and Hart in Self-understanding in Childhood and Adolescence. Cambridge University Press, Cambridge, 1988). The study found that the Asperger's group demonstrated impairment in the "self-as-object" and "self-as-subject" domains of the Self-understanding Interview, which supported Hobson's concept of an impaired capacity for self-awareness and self-reflection in people with ASD. The results are discussed with reference to previous research regarding the development of self-understanding in people with ASD.

Parents with learning disabilities: perceived incidence and needs.

Recent literature and government guidance has highlighted the rights of parents with leaming disabilities and role of services in meeting their needs. In the present study, three focus groups were conducted involving 35 members of community health visiting teams in order to identify estimated incidence and needs of parents with learning disabilities and the needs of services in supporting them. The health visiting teams identified clinically significant numbers of parents with learning disabilities and--through qualitative focus group discussion--suggested a significant need for intervention and support for these parents, greater resources and knowledge within health visiting services, and improved interagency co-ordination and communication.

The not guilty verdict: psychological reactions to a diagnosis of Asperger syndrome in adulthood.

Asperger syndrome is a relatively new diagnostic classification. A number of factors make receiving a diagnosis of Asperger syndrome in adulthood a unique experience. This study used a phenomenological approach to examine the experiences of 10 adults receiving such a diagnosis. Results suggested that six major themes were associated with receiving a diagnosis of Asperger syndrome. Individuals discussed their negative life experiences and their experience of services prior to diagnosis, which led to individuals holding certain beliefs about the symptoms of Asperger syndrome. These beliefs had an effect on the formation of each individual's perceived self-identity. Participants made links between how they felt when they received the diagnosis and their current beliefs about both their ;symptoms' and themselves. Finally, participants highlighted the importance of the societal view of Asperger syndrome. The implications of these findings are reappraised in the context of previous research and the wider literature on identity formation.

A qualitative evaluation of patient experiences when diagnosed with oral cancer recurrence.

Loco-regional recurrence after radical primary treatment of oral cancer is associated with poor prognosis and major patient and career distress. The patient's psychosocial response to recurrence is underreported in the literature. This is one of the few papers to address in detail this stage in a patient's cancer journey. Qualitative methodology was used. Patients were recruited over a 13-month period. Analysis of recorded transcripts from 9 patients suggested that their illness experience and psychological response to diagnosis were multifaceted. Six key themes were identified, which were subdivided into 23 categories. Themes included emotional reactions, reevaluation, active coping strategies, life changes, support, and improvement in relationships. Emotional reactions ranged from shock and devastation, to fear and uncertainty, to hopelessness, to shame, to denial. Not all reactions were negative, and more positive experiences such as new found openness and improvement in relationships were expressed. There is heightened emotional vulnerability, and this leads to potentially difficult management issues among clinicians and members of the multidisciplinary team. Extreme sensitivity is required by all the individuals involved in providing healthcare at this acute time of patient and career distress.

Post-traumatic stress disorder-related symptoms in relatives of patients following intensive care.

OBJECTIVE: To evaluate the effectiveness of the provision of information in the form of a rehabilitation program following critical illness in reducing psychological distress in the patients' close family. DESIGN: Randomised controlled trial, blind at follow-up with final assessment at 6 months. SETTING: Two district general hospitals and one teaching hospital. PATIENTS AND PARTICIPANTS: The closest family member of 104 recovering intensive care unit (ICU) patients. INTERVENTIONS: Ward visits, ICU clinic appointments at 2 and 6 months. Relatives and patients received the rehabilitation program at 1 week after ICU discharge. The program comprised a 6-week self-help manual containing information about recovery from ICU, psychological information and practical advice. MEASUREMENTS AND RESULTS: Psychological recovery of relatives was assessed by examining the rate of depression, anxiety, and post-traumatic stress disorder (PTSD)-related symptoms by 6 months after ICU. The proportion of relatives scoring in the range >19 on the Impact of Events Scale (cause for concern) was high in both groups at 49% at 6 months. No difference was shown in the rate of depression, anxiety, or PTSD-related symptoms between the study groups. CONCLUSION: A high incidence of psychological distress was evident in relatives. Written information concerning recovery from ICU provided to the patient and their close family did not reduce this. High levels of psychological distress in patients were found to be correlated with high levels in relatives.

Rehabilitation after critical illness: a randomized, controlled trial.

OBJECTIVE: To evaluate the effectiveness of a rehabilitation program following critical illness to aid physical and psychological recovery. DESIGN: Randomized controlled trial, blind at follow-up with final assessment at 6 months. SETTING: Two district general hospitals and one teaching hospital. PATIENTS: Patients were 126 consecutively admitted intensive care patients meeting the inclusion criteria. INTERVENTIONS: Control patients received ward visits, three telephone calls at home, and clinic appointments at 8 wks and 6 months. Intervention patients received the same plus a 6-wk self-help rehabilitation manual. MEASUREMENTS AND MAIN RESULTS: We measured levels of depression and anxiety (Hospital Anxiety and Depression Scale), phobic symptoms (Fear Index), posttraumatic stress disorder (PTSD)-related symptoms (Impact of Events Scale), and scores on the Short-Form Health Survey physical dimension 8 wks and 6 months after intensive care unit (ICU) treatment. Memory for ICU was assessed at 2 wks post-ICU discharge using the ICU Memory Tool.The intervention group improved, compared with the control patients, on the Short-Form Health Survey physical function scores at 8 wks and 6 months (p =.006), and there was a trend to a lower rate of depression at 8 wks (12% vs. 25%). However, there were no differences in levels of anxiety and PTSD-related symptoms between the groups. The presence of delusional memories was correlated significantly with both anxiety and Impact of Events Scale scores. CONCLUSIONS: A self-help rehabilitation manual is effective in aiding physical recovery and reducing depression. However, in those patients recalling delusional memories from the ICU, further psychological care may be needed to reduce the incidence of anxiety and PTSD-related symptoms.

The impact of current media events on hallucinatory content: the experience of the intensive care unit (ICU) patient.

OBJECTIVES: To investigate the influence of current media events on hallucinatory content in ICU patients. DESIGN AND METHODS: Patients were interviewed over a one-year period, and their descriptions of hallucinatory experiences, together with weekly media stories, were assessed for themes of war. RESULTS: Media coverage for war-related stories rose significantly during the period of war in Kosovo (24/3/99-20/6/99). Patients whose ICU stays coincided with this conflict were more likely to have hallucinatory experiences involving themes of war or the military. Older adults (> 70) were also more susceptible to this effect. CONCLUSIONS: Contextual variables such as current media events can have a significant impact upon the contents of hallucinatory experiences.