Illness Survivors Research Articles

Illness perception and concordance between prostate cancer survivors and caregivers and adherence to self-management behaviors.

e24002 Background: Illness beliefs are important determinants of self-management behaviors (SMBs). Spousal or informal caregiver involvement improves clinical outcomes in non-cancer survivors with chronic diseases. However, very little is known about the influence that caregivers have on comorbid disease SMBs in cancer survivors. In this study, we aim to understand and identify concordance in illness beliefs and perceptions between caregivers and prostate cancer survivors and to determine their impact on hypertension (HTN) SMBs. Methods: Survivors and their caregivers completed surveys assessing their beliefs and perceptions and SMBs regarding survivors’ HTN. Both survivors and caregivers answered the Brief Illness Perception Questionnaire (BIPQ) to assess beliefs and perceptions of survivors’ HTN. The BIPQ score is a sum of eight questions with a higher sum score indicating a more threatening view of the illness. Survivors reported adherence to SMBs using the Medication Adherence Report Scale (MARS) and Hypertension Self-Care Activity Level Effects (HSCALE). MARS scores >4.5 were considered adherent. The HSCALE isdivided into five sub-scores – diet, physical activity, smoking behavior, weight management and alcohol intake and each was score was dichotomized. Cohen’s Kappa statistic assessed concordance between survivor and caregiver dyad responses to the BIPQ. Logistic regression assessed associations between survivor and caregiver BIPQ scores and odds of SMB adherence. Results: This analysis included 55 dyads. Mean age of survivors was 70.4 years ± 9.6; 12 (22%) were Black, 36 (65%) were White, 2 (4%) were Asian and 3 (5%) were other race. Mean age of caregivers was 64.4 years ± 10.5, 9 (16%) self-identified as Black, 35 (64%) White, 2 (4%) Asian and 3 (5%) other race. Survivors and caregivers had fair agreements about how much HTN affected survivors’ lives (k = 0.147, p = 0.008), how concerned survivors are about their HTN k = 0.130, p = 0.014), and HTN’s emotional impact on survivors (k = 0.185, p = 0.002). However, survivor-caregiver concordance about HTN had no significant impact on survivors’ SMBs. In contrast, caregivers’ beliefs about HTN was associated with survivors’ SMB such that a 1-point increase in caregiver’s BIPQ score was associated with 8% increase in the odds of survivors’ self-reported weight adherence (p = 0.0314). Survivors’ HTN beliefs were not associated with adherence to SMBs. Conclusions: Caregivers have a significant influence on prostate cancer survivors’ adherence to weight-related SMB, demonstrating that it is important to also educate caregivers who support cancer survivors with chronic comorbidities. Future analysis will include a larger cohort to better understand the interrelationship between caregivers’ illness beliefs and survivors’ SMBs and may help clinicians better direct interventions to improve survivorship outcomes.

Autonomic dysfunction in ‘long COVID’: rationale, physiology and management strategies

The SARS-CoV-2 (COVID-19) pandemic has caused unprecedented morbidity, mortality and global disruption. Following the initial surge of infections, focus shifted to managing the longer-term sequelae of illness in survivors. 'Post-acute COVID' (known colloquially as 'long COVID') is emerging as a prevalent syndrome. It encompasses a plethora of debilitating symptoms (including breathlessness, chest pain, palpitations and orthostatic intolerance) which can last for weeks or more following mild illness. We describe a series of individuals with symptoms of 'long COVID', and we posit that this condition may be related to a virus- or immune-mediated disruption of the autonomic nervous system resulting in orthostatic intolerance syndromes. We suggest that all physicians should be equipped to recognise such cases, appreciate the symptom burden and provide supportive management. We present our rationale for an underlying impaired autonomic physiology post-COVID-19 and suggest means of management.

Mental health, violence and psychological coercion among female and male trafficking survivors in the greater Mekong sub-region: a cross-sectional study

BackgroundHuman trafficking is a pervasive global crime with important public health implications that entail fundamental human rights violations in the form of severe exploitation, violence and coercion. Sex-specific associations between types of violence or coercion and mental illness in survivors of trafficking have not been established.MethodsWe conducted a cross-sectional study with 1015 female and male survivors of trafficking (adults, adolescents and children) who received post-trafficking assistance services in Cambodia, Thailand or Vietnam and had been exploited in various labor sectors. We assessed anxiety and depression with the Hopkins Symptoms Checklist (HSCL-25) and post-traumatic stress disorder (PTSD) symptoms with the Harvard Trauma Questionnaire (HTQ), and used validated questions from the World Health Organization International Study on Women’s Health and Domestic Violence to measure physical and sexual violence. Sex-specific modified Poisson regression models were estimated to obtain prevalence ratios (PRs) and their 95% confidence intervals (CI) for the association between violence (sexual, physical or both), coercion, and mental health conditions (anxiety, depression and PTSD).ResultsAdjusted models indicated that for females, experiencing both physical and sexual violence, compared to not being exposed to violence, was a strong predictor of symptoms of anxiety (PR = 2.08; 95% CI: 1.64–2.64), PTSD (PR = 1.55; 95% CI: 1.37–1.74), and depression (PR = 1.57; 95% CI: 1.33–1.85). Among males, experiencing physical violence with additional threats made with weapons, compared to not being exposed to violence, was associated with PTSD (PR = 1.59; 95% CI: 1.05–2.42) after adjustment. Coercion during the trafficking experience was strongly associated with anxiety, depression, and PTSD in both females and males. For females in particular, exposure to both personal and family threats was associated with a 96% elevated prevalence of PTSD (PR = 1.96; 95% CI: 1.32–2.91) and more than doubling of the prevalence of anxiety (PR = 2.11; 95% CI: 1.57–2.83).ConclusionsThe experiences of violence and coercion in female and male trafficking survivors differed and were associated with an elevated prevalence of anxiety, depression, and PTSD in both females and males. Mental health services must be an integral part of service provision, recovery and re-integration for trafficked females and males.

Somatosensory Functions in Survivors of Critical Illness.

There is growing evidence for increased levels of pain and reduced health-related quality of life in survivors of critical illness. Recent studies showed marked small nerve fiber pathology in critically ill patients, which may contribute to chronic pain states and reduced physical recovery after ICU discharge. Primary objective of this study was the comparison of somatosensory functions between survivors of critical illness 6 months after ICU discharge and controls. In post hoc analyses, we aimed to identify associations between small fiber deficits, pain, health-related quality of life, and clinical data. Cross-sectional study. Study in critical illness survivors. Critical illness survivors (n = 84) and controls (n = 44). None. Somatosensory functions were assessed with validated quantitative sensory testing. Pain and pain-related disability were assessed with the chronic pain grade questionnaire. Health-related quality of life was assessed by means of the Short Form-36. Compared with controls, former patients showed significantly increased thermal detection thresholds and more abnormal values in thermal testing, indicating reduced small fiber functioning. In addition, compared to patients without significant small fiber deficits (n = 46, 54.8%), patients with significant small fiber deficits (n = 38, 45.2%) reported higher average pain intensity, pain-related disability, and reduced physical health-related quality of life in the SF-36. A large portion of former critically ill patients show small fiber deficits which seem to be associated with increased pain and reduced physical health-related quality of life. Screening of somatosensory functions in the (post-) acute setting could possibly help to identify patients at risk of long-term impairments.

The impact of disability in survivors of critical illness.

To use the World Health Organisation's International Classification of Functioning to measure disability following critical illness using patient-reported outcomes. A prospective, multicentre cohort study conducted in five metropolitan intensive care units (ICU). Participants were adults who had been admitted to the ICU, received more than 24h of mechanical ventilation and survived to hospital discharge. The primary outcome was measurement of disability using the World Health Organisation's Disability Assessment Schedule 2.0. The secondary outcomes included the limitation of activities and changes to health-related quality of life comparing survivors with and without disability at 6months after ICU. We followed 262 patients to 6months, with a mean age of 59±16years, and of whom 175 (67%) were men. Moderate or severe disability was reported in 65 of 262 (25%). Predictors of disability included a history of anxiety/depression [odds ratio (OR) 1.65 (95% confidence interval (CI) 1.22, 2.23), P=0.001]; being separated or divorced [OR 2.87 (CI 1.35, 6.08), P=0.006]; increased duration of mechanical ventilation [OR 1.04 (CI 1.01, 1.08), P=0.03 per day]; and not being discharged to home from the acute hospital [OR 1.96 (CI 1.01, 3.70) P=0.04]. Moderate or severe disability at 6months was associated with limitation in activities, e.g. not returning to work or studies due to health (P<0.002), and reduced health-related quality of life (P<0.001). Disability measured using patient-reported outcomes was prevalent at 6months after critical illness in survivors and was associated with reduced health-related quality of life. Predictors of moderate or severe disability included a prior history of anxiety or depression, separation or divorce and a longer duration of mechanical ventilation. NCT02225938.

Stress disorders following prolonged critical illness in survivors of severe sepsis.

To examine the frequency of acute stress disorder and posttraumatic stress disorder in chronically critically ill patients with a specific focus on severe sepsis, to classify different courses of stress disorders from 4 weeks to 6 months after transfer from acute care hospital to postacute rehabilitation, and to identify patients at risk by examining the relationship between clinical, demographic, and psychological variables and stress disorder symptoms. Prospective longitudinal cohort study, three assessment times within 4 weeks, 3 months, and 6 months after transfer to postacute rehabilitation. Patients were consecutively enrolled in a large rehabilitation hospital (Clinic Bavaria, Kreischa, Germany) admitted for ventilator weaning from acute care hospitals. We included 90 patients with admission diagnosis critical illness polyneuropathy or critical illness myopathy with or without severe sepsis, age between 18 and 70 years with a length of ICU stay greater than 5 days. None. Acute stress disorder and posttraumatic stress disorder were diagnosed according to the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition, criteria by a trained and experienced clinical psychologist using a semistructured clinical interview for Diagnostic and Statistical Manual of Mental Disorders. We further administered the Acute Stress Disorder Scale and the Posttraumatic Symptom Scale-10 to assess symptoms of acute stress disorder and posttraumatic stress disorder. Three percent of the patients had an acute stress disorder diagnosis 4 weeks after transfer to postacute rehabilitation. Posttraumatic stress disorder was found in 7% of the patients at 3-month follow-up and in 12% after 6 months, respectively. Eighteen percent of the patients showed a delayed onset of posttraumatic stress disorder. Sepsis turned out to be a significant predictor of posttraumatic stress disorder symptoms at 3-month follow-up. A regular screening of post-ICU patients after discharge from hospital should be an integral part of aftercare management. The underlying mechanisms of severe sepsis in the development of posttraumatic stress disorder need further examination.

Narratives and Healing: Exploring One Family's Stories of Cancer Survivorship

This study investigates the narratives of one couple who lived through life-changing events following a cancer diagnosis. The narratives of the cancer survivor and her husband are explored as they struggle to cope with their situation, provide support for one another, and consider their changing personal identities. This research addresses the communication dilemmas that often occur when family members, friends, and providers do not know how to respond to an individual diagnosed with cancer. The rationale for this study is threefold. First, this study advocates the need for learning about the composition of survivor identities over the course of a life-threatening illness. Second, this study seeks to understand how illness survivors and their family members use narratives as a method of communicating their changing identities. Finally, communicating about illness is often perceived as 'taboo', and this study may encourage others to be a part of the participants' stories and learn more about why those stories are often concealed. We learn from these three narratives that supportive relationships are central to healing and that it is through communication among family members that identities are composed and recomposed throughout the illness journey. This research affects communication, social support, identity, and emotion literature and is aligned with human appraisal theories as well. Finally, it offers insights into the ways in which we talk about, hear about, and learn about illness.

Meaning of illness and spirituality in ovarian cancer survivors.

To describe spirituality and meaning of illness in survivors of ovarian cancer. Ethnographic study based on seven years of natural correspondence among survivors of ovarian cancer and a support newsletter. 21,806 letters, cards, and e-mails received from survivors of ovarian cancer from 1994-2000. Analysis was based on the Quality of Life (QOL) Ovarian Cancer Instrument. Data were bracketed and assigned within a table according to QOL themes. Spirituality, meaning, QOL, and cancer survivorship. Spirituality was relied on heavily as a coping mechanism, as well as a method of deriving meaning from the cancer experience. Data from survivors of ovarian cancer validated previously established meaning in cancer themes and identified eight new themes specific to meaning in ovarian cancer survivorship. The nature of ovarian cancer implicates specific characteristics that alter the meaning of QOL and survivorship. Spirituality is an important component of QOL and contributes to the process of deriving meaning from the ovarian cancer experience. Knowledge of the unique survivorship issues of patients with ovarian cancer can enable nurses to improve their care for these women.

812 Applicability of MELD scoring system to predict prognosis in patients with acute liver failure

Plasma levels of growth factors may be important in determining the extent of liver regeneration in patients with fulminant hepatic failure and in this study human hepatocyte growth factor and biliprotein (bilirubin covalently bound to albumin) were determined in patients with fulminant hepatic failure, mainly as a result of acetaminophen overdose. Admission values for plasma human hepatocyte growth factor were significantly raised, although with a wide range in acetaminophen-induced fulminant hepatic failure (median 7.4 ng/ml, range 0.45–48.4 ng/ml, n=34) and in fulminant hepatic failure from other causes (3.8 ng/ml, 1.72–25.1 ng/ml, n=9) as compared to normal subjects (0.24 ng/ml, 0–0.5 ng/ml, n=30). Higher plasma human hepatocyte growth factor was observed in patients who died (10.1 ng/ml, 3.8–48.4 ng/ml, n=19) than in those who survived (4.3 ng/ml, 0.45–25.1 ng/ml, n=22, p<0.02), which may reflect lack of hepatic clearance in the former group. The median plasma biliprotein on admission (13.2 mg/l, range 6.3–100.7 mg/l, n=43) was significantly increased compared to normal subjects (1.3 mg/l, 0–4.1 mg/l, n=7, p<0.001) with no difference between patients who survived or died, although when plasma biliprotein results were expressed as a percentage of the total bilirubin, the values were slightly higher in survivors (median 14.4%, range 10.8–40.5%, n=23) compared to those who died (12.1%, 7.7–20.9%, n=20, p=0.004). In cases where serial analyses during the course of illness were available, plasma human hepatocyte growth factor tended to decrease during the course of the illness in survivors and increase in those who died, whereas the biliprotein expressed as a percentage of total bilirubin increased in survivors with little change in non-survivors.

A typology of responses to illness in survivors of myocardial infarction.

One hundred and eighteen survivors of myocardial infarction were assigned scores on eight dimensions of illness behaviour recently described as arising in response to myocardial infarction. These data were subjected to a cluster analysis to produce an optimal solution of four homogeneous clusters of patients. The first contained patients who, on clinical grounds, appeared to be claiming illness as a highly significant and consequential occurrence in their lives; the second accepted illness but experienced a marked affective response to it; the third appeared to adopt a realistic approach to illness and be coping adequately; and the fourth seemed to be denying (or at least minimizing) both the presence of serious illness and its possible consequences. These findings were discussed in terms of their bearing on prognosis, within the context of abnormal illness behaviour.