SPLIT ENZ: Survivorship of Patients post Long Intensive care stay, Exploration/Experience in a New Zealand cohort (A mixed methods study protocol) (Preprint)

2021 ◽  
Author(s):  
Lynsey Sutton-Smith ◽  
Elliot Bell ◽  
Susanna Every-Palmer ◽  
Mark Weatherall ◽  
Paul Skirrow
Keyword(s):  
Quality Of Life ◽  
Mixed Methods ◽  
New Zealand ◽  
Critical Illness ◽  
Unmet Needs ◽  
Mixed Methods Study ◽  
Long Term Outcomes ◽  
Published Research

BACKGROUND ‘Post Intensive Care Syndrome’ (PICS) was defined by the Society of Critical Care Medicine in 2012 with subsequent international research highlighting the poor long-term outcomes, reduced quality of life, and ongoing impairments, activity limitations, and participation restrictions for survivors of critical illness. However, to date, there has been no published research about long-term outcomes for New Zealand survivors of critical illness. OBJECTIVE This mixed methods study will be the first to explore long-term outcomes after critical illness in New Zealand. It will also be done in the context of the global COVID pandemic. The primary objectives are to describe and quantify symptoms and disability in survivors of critical illness, to explore possible risk factors for their development, and to identify longer-term unmet needs for those who survive for a year. METHODS This will be a mixed methods study. There will be a prospective cohort study of 100 critically ill patients followed up one, six- and 12-months after hospital discharge. The primary outcome for the cohort study will be disability assessed with the World Health Organization’s Disability Assessment Scale: WHODAS 2.0. Secondary outcomes will focus on mental health using the Hospital Anxiety and Depression scale (HADS) and the Impact of Events Scale-revised (IES-r), cognitive function using the Montreal Cognitive Assessment (MOCA- blind), and Health related Quality of Life by the EQ-5D-5L. A second element of the study will use qualitative grounded theory methods to explore patients’ experiences of recovery, highlight their unmet needs and develop a model of barriers and facilitators to coping. This will use a sample from the main cohort with interviews conducted six months after discharge. RESULTS This study has received full ethics approval from the New Zealand Northern A Health and Disability Ethics Committee on the 16/8/21 (21/NTA/107) and has been registered with ANZCTR on 5/10/21 (12621001335886). SPLIT ENZ is due to start recruitment in early 2022 and will continue recruitment for up to two years aiming to enroll approximately 125 patients. Data collection is estimated to be completed by 2024–20255 and will be published once all data is available for reporting. CONCLUSIONS Although International research identifies 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, an illness which may include PICS in its sequelae. To understand the extent of disability and the survival journey in New Zealand, would be of benefit not only to patients and families making sense of their recovery, but to clinicians and health care workers wanting to understand how best to support these patients once they have left hospital. CLINICALTRIAL Ethics ID: 21/NTA/107. Australia and New Zealand Clinical trials registration (ANZCTR) no: 1262100133588

scholarly journals Quality of life among survivors of prolonged critical illness; a mixed methods study

Critical Care ◽  
2008 ◽  
Vol 12 (Suppl 2) ◽  
pp. P508
Author(s):  
P Ramsay ◽  
G Huby ◽  
A Thompson ◽  
T Walsh
Keyword(s):  
Quality Of Life ◽  
Mixed Methods ◽  
Critical Illness ◽  
Mixed Methods Study

Co-Design and Open Trial of Starship Rescue, a Cognitive Behavior Therapy, Biofeedback, and Game-Based eHealth Intervention to Treat Anxiety in Children and Young People with Long-Term Physical Conditions (Preprint)

2020 ◽  
Author(s):  
Hiran Thabrew ◽  
Karolina Stasiak ◽  
Harshali Kumar ◽  
Tarique Naseem ◽  
Christopher Frampton ◽  
...  
Keyword(s):  
Quality Of Life ◽  
New Zealand ◽  
Young People ◽  
Preliminary Evidence ◽  
Children And Young People ◽  
Physical Conditions ◽  
System Usability Scale ◽  
Ehealth Intervention

BACKGROUND Approximately 10% to 12% of New Zealand children and young people have long-term physical conditions (also known as chronic illnesses) and are more likely to develop psychological problems, particularly anxiety and depression. Delayed treatment leads to worse physical and mental healthcare, school absence, and poorer long-term outcomes. Recently, electronic health (eHealth) interventions, especially those based on the principles of Cognitive Behavior Therapy (CBT), have been shown to be as good as face-to-face therapy. Biofeedback techniques have also been shown to enhance relaxation during the treatment of anxiety. However, these modalities have rarely been combined. Young people with long-term physical conditions have expressed a preference for well-designed and technologically-based support to deal with psychological issues, especially anxiety. OBJECTIVE This study aimed to co-design and evaluate the (i) acceptability and (ii) usability of a CBT and biofeedback-based, 5-module eHealth game called ‘Starship Rescue’ and (iii) to provide preliminary evidence regarding its effectiveness in addressing anxiety and quality of life in young people with long-term physical conditions. METHODS Starship Rescue was co-designed with children and young people from a tertiary hospital in Auckland, New Zealand. Following this, 24 young people aged 10 to 17 years were enrolled in an open trial, during which they were asked to use the game for an 8-week period. Acceptability of the game to all participants was assessed using a brief, open-ended questionnaire, and more detailed feedback was obtained from a subset of 10 participants via semi-structured interviews. Usability was evaluated via the System Usability Scale (SUS) and device-recorded frequency and duration of access on completion of the game. Anxiety levels were measured prior to commencement, on completion of the game, and 3 months later using the Generalized Anxiety Disorder 7-item scale (GAD-7) and Spence Child Anxiety Scales (SCAS), and at the start of each module and at the end of the game using an embedded Likert/visual analog scale. Quality of life was measured prior to commencement and on completion of the game using the Pediatric Quality of Life Scale (PEDS-QL). RESULTS Users gave Starship Rescue an overall rating of 5.9 out of 10 (range 3-10 and a mean score of 71 out of 100 (SD 11.7; min 47.5; max 90) on the System Usability Scale (SUS). The mean time period for use of the game was just over 11-weeks (78.8 days, 13.5 hours, 40 minutes). Significant reductions in anxiety were noted between the start and end of the game on the GAD-7 (-4.6 (p=0.000)), SCAS (-9.6 (p=0.005)), and the Likert/visual analogue scales (-2.4 (p=0.001)). Quality of life also improved on the PedsQL scale (+4.3 (p=0.042)). All changes were sustained at 3-month follow-up. CONCLUSIONS This study provides preliminary evidence for Starship Rescue being an acceptable, usable and effective eHealth intervention for addressing anxiety in young people with long-term physical conditions. Further evaluation is planned via a more formal randomized controlled trial. CLINICALTRIAL Australian New Zealand Clinical Trials Network Registry (ANZCTR): ACTRN12616001253493p;https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=371443 (Archived by WebCite at http://www.webcitation.org/6sYB716lf)

scholarly journals Yoga therapy to reduce fatigue in cancer: effects of reminder e-mails and long-term efficacy

2021 ◽  
Author(s):  
Teresa Zetzl ◽  
Andre Pittig ◽  
Agnes Renner ◽  
Birgitt van Oorschot ◽  
Elisabeth Jentschke
Keyword(s):  
Quality Of Life ◽  
Cancer Patients ◽  
Mediation Model ◽  
Long Term Effects ◽  
Long Term Outcomes ◽  
Cognitive Fatigue ◽  
Yoga Therapy ◽  
Life Data

Abstract Objective To examine the efficacy of reminder e-mails to continue yoga therapy on practice frequency and fatigue in cancer patients and long-term effects of yoga on fatigue, depression, and quality of life. Methodology One hundred two cancer patients who completed an 8-week yoga therapy were randomly allocated to two groups: reminder (N = 51) vs. no-reminder group (N = 51). After completing yoga therapy, the reminder group received weekly e-mails for 24 weeks, which reminded them of practicing yoga, whereas the no-reminder group did not. Primary outcomes were fatigue and practice frequency, and long-term outcomes were fatigue, depression, and quality of life. Data were assessed using questionnaires after yoga therapy (T1) and 6 months after completing yoga therapy (T2). Result A significantly stronger reduction of general (p = 0.038, d = 0.42) and emotional fatigue (p = 0.004, d = 0.59) and a higher increase of practice frequency (p = 0.015, d = 0.52) between T1 and T2 were found for the reminder group compared to the no-reminder group. In the mediation model, practice frequency as a mediator partially explained the changes in emotional fatigue (indirect effect B =  − 0.10). Long-term effects of yoga therapy regarding fatigue, depression, and quality of life were found (F > 7.46, p < 0.001, d > 0.54). Conclusion Weekly reminder e-mails after yoga therapy can positively affect general and emotional fatigue and help cancer patients with fatigue establish a regular yoga practice at home. However, higher practice frequency did not lead to higher physical or cognitive fatigue improvement, suggesting other factors that mediate efficacy on physical or cognitive fatigue, such as mindfulness or side effects of therapy.

Long-Term Outcomes and Quality of Life in Patients after Soave Pull-Through Operation for Hirschsprung's Disease: An Observational Retrospective Study

2017 ◽  
Vol 28 (05) ◽  
pp. 445-454 ◽  
Author(s):  
Tania Mahler ◽  
Martine Dassonville ◽  
Dinh Truong ◽  
Annie Robert ◽  
Philippe Goyens ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Fecal Incontinence ◽  
Hirschsprung's Disease ◽  
Hirschsprung’S Disease ◽  
Bowel Function ◽  
Long Term Outcomes ◽  
Neurologic Impairment ◽  
Pull Through

Introduction Patients after pull-through operation for Hirschsprung's disease (HD) are at high risk of defecation disorders. This study aimed at investigating their long-term outcomes and quality of life (QoL) in comparison with controls. Patients and Methods Patients older than 5 years operated on for HD were interviewed to complete detailed questionnaires on bowel function. Patients without neurologic impairment were enrolled in a QoL survey to compare with controls matched for sex and age and selected randomly from the general population using sampling set in a ratio of four controls to one case of HD. Results In total, 53 operated patients were enrolled. Mean age of the patients was 16 ± 8 years, with 68% boys. Rectosigmoid aganglionosis was the most seen form of HD in 38 (72%) cases. Open Soave was performed in 40 (75.5%) cases, and minimally invasive surgery Soave (MIS Soave) in 13 (24.5%) cases. At investigation, prevalence of fecal incontinence and constipation were 22.6 and 13.2%, respectively. Regarding QoL survey, 45 patients and 180 controls were enrolled, excluding 8 patients with neurologic impairment. Thirty-seven (82.2%) patients were classified as having a good QoL (score ≥ 9 points); whereas six had a fair QoL (5–8 points) and two had a poor QoL (< 5 points). QoL score in the cases and the controls were 10.2 ± 2.5 and 11.9 ± 0.4 points, respectively. Long aganglionosis form of HD was significantly associated with a low QoL (score < 8 points), adjusted odds ratio = 9, 95% confidence interval [1.3; 64.1] (p < 0.05). In subscales analyses, the prevalence of each dimension including fecal continence, school absenteeism, unhappiness or anxiety, food restriction, and peer rejection was significantly higher in operated patients than in controls (p <0.001). Conclusion Although the QoL of patients operated on for HD in general was with good outcomes, fecal incontinence and constipation still are problematic issues and challenges in a high percentage of patients. Therefore, a long-term and multidisciplinary follow-up is essentially required for these patients.

scholarly journals Identifying unmet needs in long-term stroke care using in-depth assessment and the Post-Stroke Checklist – The Managing Aftercare for Stroke (MAS-I) study

2018 ◽  
Vol 3 (3) ◽  
pp. 237-245 ◽  
Author(s):  
Benjamin Hotter ◽  
Inken Padberg ◽  
Andrea Liebenau ◽  
Petra Knispel ◽  
Sabine Heel ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Caregiver Burden ◽  
Unmet Needs ◽  
Community Dwelling ◽  
Social Needs ◽  
Interquartile Range ◽  
Stroke Patients ◽  
Post Stroke

Introduction Detailed data on the long-term consequences and treatment of stroke are scarce. We aimed to assess the needs and disease burden of community-dwelling stroke patients and their carers and to compare their treatment to evidence-based guidelines by a stroke neurologist. Methods We invited long-term stroke patients from two previous acute clinical studies ( n = 516) in Berlin, Germany to participate in an observational, cross-sectional study. Participants underwent a comprehensive interview and examination using the Post-Stroke Checklist and validated standard measures of: self-reported needs, quality of life, overall outcome, spasticity, pain, aphasia, cognition, depression, secondary prevention, social needs and caregiver burden. Results Fifty-seven participants (median initial National Institutes of Health Stroke Scale score 10 interquartile range 4–12.75) consented to assessment (median 41 months (interquartile range 36–50) after stroke. Modified Rankin Scale was 2 (median; interquartile range 1–3), EuroQoL index value was 0.81 (median; interquartile range 0.70–1.00). The frequencies for disabilities in the major domains were: spasticity 35%; cognition 61%; depression 20%; medication non-compliance 14%. Spasticity ( p = 0.008) and social needs ( p < 0.001) had the strongest impact on quality of life. The corresponding items in the Post-Stroke Checklist were predictive for low mood ( p < 0.001), impaired cognition ( p = 0.015), social needs ( p = 0.005) and caregiver burden ( p = 0.031). In the comprehensive interview, we identified the following needs: medical review (30%), optimization of pharmacotherapy (18%), outpatient therapy (47%) and social work input (33%). Conclusion These results suggest significant unmet needs and gaps in health and social care in long-term stroke patients. Further research to develop a comprehensive model for managing stroke aftercare is warranted. Clinical Trial Registration: clinicaltrials.gov NCT02320994.

Is health-related quality of life between 90 and 180 days following stroke associated with long-term unmet needs?

2016 ◽  
Vol 25 (8) ◽  
pp. 2053-2062 ◽  
Author(s):  
N. E. Andrew ◽  
M. F. Kilkenny ◽  
N. A. Lannin ◽  
D. A. Cadilhac
Keyword(s):  
Quality Of Life ◽  
Unmet Needs ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related
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