Early Supportive Care Research Articles

Integration of early supportive and palliative care in a patient’s journey with cancer

Specialist Palliative Care aims to effectively support the quality of life of patients and those close to them through progressive, life-limiting disease. Quality of life, an individual concept, requires a personalized approach to support and maintain it. Primarily achieved through the management of symptoms, both physical and psychological, alongside social and spiritual support, this approach is of the utmost importance to patients with advanced malignancy. Several randomized, controlled trials suggest earlier provision of specialist palliative care may increase quality of life, improve symptoms and facilitate considered end of life care planning. This appears beneficial; however, evidence is mixed about the effectiveness of early specialist palliative care and its potential benefits. Results, therefore, should be interpreted with caution. In reviewing the literature, it is clear that implementing early specialist palliative care is fraught with obstacles and requires increased resources and funding. Until the benefits and cost implications for such provision are better understood, it will not be accessible to all that may have potential to benefit.

The epidemiology of sickle cell disease in children recruited in infancy in Kilifi, Kenya: a prospective cohort study

SummaryBackgroundSickle cell disease is the most common severe monogenic disorder in humans. In Africa, 50–90% of children born with sickle cell disease die before they reach their fifth birthday. In this study, we aimed to describe the comparative incidence of specific clinical outcomes among children aged between birth and 5 years with and without sickle cell disease, who were resident within the Kilifi area of Kenya.MethodsThis prospective cohort study was done on members of the Kilifi Genetic Birth Cohort Study (KGBCS) on the Indian Ocean coast of Kenya. Recruitment to the study was facilitated through the Kilifi Health and Demographic Surveillance System (KHDSS), which covers a resident population of 260 000 people, and was undertaken between Jan 1, 2006, and April 30, 2011. All children who were born within the KHDSS area and who were aged 3–12 months during the recruitment period were eligible for inclusion. Participants were tested for sickle cell disease and followed up for survival status and disease-specific admission to Kilifi County Hospital by passive surveillance until their fifth birthday. Children with sickle cell disease were offered confirmatory testing and care at a dedicated outpatient clinic.Findings15 737 infants were recruited successfully to the KGBCS, and 128 (0·8%) of these infants had sickle cell disease, of whom 70 (54·7%) enrolled at the outpatient clinic within 12 months of recruitment. Mortality was higher in children with sickle cell disease (58 per 1000 person-years of observation, 95% CI 40–86) than in those without sickle cell disease (2·4 per 1000 person-years of observation, 2·0–2·8; adjusted incidence rate ratio [IRR] 23·1, 95% CI 15·1–35·3). Among children with sickle cell disease, mortality was lower in those who enrolled at the clinic (adjusted IRR 0·26, 95% CI 0·11–0·62) and in those with higher levels of haemoglobin F (HbF; adjusted IRR 0·40, 0·17–0·94). The incidence of admission to hospital was also higher in children with sickle cell disease than in children without sickle cell disease (210 per 1000 person-years of observation, 95% CI 174–253, vs 43 per 1000 person-years of observation, 42–45; adjusted IRR 4·80, 95% CI 3·84–6·15). The most common reason for admission to hospital among those with sickle cell disease was severe anaemia (incidence 48 per 1000 person-years of observation, 95% CI 32–71). Admission to hospital was lower in those with a recruitment HbF level above the median (IRR 0·43, 95% CI 0·24–0·78; p=0·005) and those who were homozygous for α-thalassaemia (0·07, 0·01–0·83; p=0·035).InterpretationAlthough morbidity and mortality were high in young children with sickle cell disease in this Kenyan cohort, both were reduced by early diagnosis and supportive care. The emphasis must now move towards early detection and prevention of long-term complications of sickle cell disease.FundingWellcome Trust.

Early Intubation vs. Supportive Care in Management of Severe Blunt Chest Trauma; a Randomized Trial Study.

Early intubation is one of the critical issues in patients with chest trauma. This study aimed to examine the effect of early intubation on outcomes of patients with severe blunt chest trauma. This clinical trial was performed on patients with blunt chest trauma referring to emergency department. Patients were randomly divided to intervention (early intubation) and control (supportive care) groups and the duration of hospitalization, complete recovery rate, laboratory changes, and in hospital mortality were compared between the two groups. 64 cases were divided into two equal groups of early intubation and control. There were no significant differences between two groups regarding age (p=0.36), sex (p=0.26), type of trauma (p>0.05), and comorbid diseases (p>0.05). The duration of hospitalization in the early intubation group was significantly lower than that of the control group (p = 0.01). 90.6% of those in early intubation group and 68.8% of those in the control group showed complete recovery (p = 0.03). There was no case of mortality in either group. There was a significant difference in venous blood pH between the groups at 6, 12, 18 and 24 hours after intubation (p < 0.05). Also, there was a significant difference in the HCO3 level at 6 and 12 hours after intubation (p <0.05). Early intubation is better than supportive treatment in patients with severe chest trauma because of a better complete recovery rate, lower duration of hospitalization, and better acid/base situation.

The ESCAPADE Study: Early supportive care for advanced cancer patients, assessing care delivery and provider engagement.

e23142 Background: Advanced cancer patients benefit from early integration of palliative care (EIPC) with usual care. A proposed model of EIPC reserves specialized palliative care (SPC) for complex patients, while primary care providers (PCP) and oncologists oversee basic palliative care (PC). We studied the attitudes among patients and their healthcare providers regarding delivery of EIPC. Methods: A cross-sectional study at a tertiary cancer centre in Ontario. Patients with newly diagnosed incurable gastrointestinal (GI) cancer were surveyed using a study specific instrument for the outcomes of interest: importance of and preferences for accessing support across 8 domains of PC (disease management, physical, psychological, social, spiritual, practical, end of life care, loss and grief). Healthcare providers within the circle of care completed a parallel survey for each recruited patient. Primary analysis involved use of descriptive statistics to summarize survey results and concordance between patient and provider responses. Results: From Oct 2017 - Nov 2018, 67 patients were surveyed (median age 69, 34% female). 90% had an identified medical oncologist, and 19% had SPC. 97% had a PCP, but only 42% listed a PCP as part of the care team. Median time from first oncology assessment for advanced cancer to patient survey completion was 52.5 days. 85 providers responded (oncologist = 59, PCP = 20, SPC = 6; response rate 92%; 1-3 physician responses per patient). Disease management and physical concerns were most important to patients. In these domains, 67% and 81% of patients endorsed receiving care from the preferred provider, but concordance between patient and physician responses regarding most responsible provider was only 58% and 38%. For all other domains, 87 – 100% of patients attributed primary responsibility to self or family rather than any healthcare provider. Conclusions: Respondents did not assign responsibility to physicians early in the disease trajectory for many domains of PC. Our findings suggest that incorporating patient activation and empowerment into EIPC requires further study. PCPs appeared to have limited involvement in PC for newly diagnosed advanced GI cancer patients.

Opening up disruptive ways of management in cancer pain: the concept of multimorphic pain.

Following a series of articles reviewing the basics of cancer pain management, in this article, we develop the guiding principle of our philosophy: the concept of multimorphic pain and how to integrate it as the innovative cornerstone of supportive care in cancer. Critical reflection based on literature analysis and clinical practice. This model aims to break with standard approaches, offering a more dynamic and exhaustive vision of cancer pain as a singular clinical entity, taking into account its multimorphic characteristics (cancer pain experience can and will change during cancer: aetiology, physiopathology, clinical presentation and consequences of pain) and the disruptive elements that can occur to influence its evolution (cancer evolution, concomitant treatments, pain from associated diseases, comorbidities and complications, or modifications in the environment). Our model establishes the main key stages for interdisciplinary management of cancer pain: Early, personalised management that is targeted and multimodal; Identification, including in advance, of potential disruptive elements throughout the care pathway, using an exhaustive approach to all the factors influencing pain, leading to patient and caregiver education; Optimal analgesic balance throughout the care pathway; Integration of this concept into a systemic early supportive care model from the cancer diagnosis. Given the difficulties still present in the management of pain in cancer, and whilst cancer is often considered as a chronic condition, the concept of multimorphic pain proposes a practical, optimised and innovative approach for clinicians and, ultimately, for patients experiencing pain.

Prognostic role of chemotherapy-induced nausea and vomiting in recurrent ovarian cancer patients: results of an individual participant data meta-analysis in 1213.

The aim of this study was to analyze the potential impact of chemotherapy-induced nausea and vomiting (CINV) on dose reductions, discontinuation of chemotherapy, and survival. This study was designed as individual participant data meta-analysis with the original study data of three phase II/III trials that were conducted by the North-Eastern German Society of Gynecological Oncology (NOGGO) including 1213 patients with recurrent ovarian cancer. Logistic and Cox regression analyses were used to estimate odds and hazard ratios after adjusting for age, ECOG, amount of delivered cycles, amount of recurrences, and amount of comedications and study. The majority of patients developed nausea (58.1%) and almost one third experienced vomiting (31.0%). CINV was not associated with FIGO stage, grading, histology, and number of recurrences. The necessity of dose reduction and discontinuation of chemotherapy did not correlate to nausea and vomiting (p = 0.88, p = 0.39 and p = 0.25, p = 0.54 respectively). Progression-free survival was shorter in patients with grade III/IV nausea and vomiting (p = 0.02; hazard ratio (HR) for grade III/IV nausea 1.58, 95% CI 1.14-2.20, and p = 0.02; HR for grade III/IV vomiting 1.67, 95% CI 1.15-2.42 respectively). CINV grade III/IV was also associated with poorer overall survival (p < 0.001; HR for grade III/IV nausea 2.35, 95% CI 1.64-3.37, and p < 0.001; HR for grade III/IV vomiting 1.67, 95% CI 1.15-2.42 respectively). CINV is significantly associated with poorer prognosis in recurrent ovarian cancer patients while there was no correlation found with the necessity of dose reduction and prior discontinuation of treatment. This study underlines the importance of prevention and treatment of CINV as part of early best supportive care.

Pentalogy of Cantrell

Pentalogy of Cantrell is a constellation of five congenital defects that pose a unique challenge for surgeons. Defects of the heart, pericardium, diaphragm, sternum, and anterior abdominal wall are pathognomonic. Although the incidence is low, it is critical to identify it in a timely fashion in order to adequately address all aspects. Early diagnosis, supportive care, and strategic surgical planning with a multidisciplinary team are all key components in managing patients with Pentalogy of Cantrell. In this text we sought to explore the evolution of both the understanding and treatment for this complex entity and provide current recommendations to today's pediatric caregivers.

Harlequin Ichthyosis: Case Report

Harlequin ichthyosis is a rare autosomal recessive congenital disease in which neonates present generalized hyperkeratotic plaques and deep fissures, ectropion, eclabium, malformation of the auricular pavilion and typical facies. Although several complications related to the skin restriction may occur, support in intensive care and early introduction of systemic retinoids, such as acitretin, have significantly contributed to patients' survival and improved prognosis. The purpose of this report is to present a rare case of harlequin ichthyosis and to discuss strategies for early diagnosis and first supportive care.

Plasma lipidome reveals critical illness and recovery from human Ebola virus disease.

Ebola virus disease (EVD) often leads to severe and fatal outcomes in humans with early supportive care increasing the chances of survival. Profiling the human plasma lipidome provides insight into critical illness as well as diseased states, as lipids have essential roles as membrane structural components, signaling molecules, and energy sources. Here we show that the plasma lipidomes of EVD survivors and fatalities from Sierra Leone, infected during the 2014-2016 Ebola virus outbreak, were profoundly altered. Focusing on how lipids are associated in human plasma, while factoring in the state of critical illness, we found that lipidome changes were related to EVD outcome and could identify states of disease and recovery. Specific changes in the lipidome suggested contributions from extracellular vesicles, viremia, liver dysfunction, apoptosis, autophagy, and general critical illness, and we identified possible targets for therapies enhancing EVD survival.

Frailty identified by geriatric assessment is associated with poor functioning, high symptom burden and increased risk of physical decline in older cancer patients: Prospective observational study

Background: Maintaining quality of life including physical functioning is highly prioritized among older cancer patients. Geriatric assessment is a recommended approach to identify patients with increased vulnerability to stressors (frailty). How frailty affects quality of life and physical functioning in older cancer patients has scarcely been investigated. Aim: Focusing on physical functioning and global quality of life, we investigated whether frailty identified by a geriatric assessment was associated with higher risk of quality-of-life deterioration during cancer treatment and follow-up. Design: Prospective, observational study. Patients were classified as frail or non-frail by a modified geriatric assessment. Quality of life was measured using the European Organization for Research and Treatment of Cancer Core Quality-of-Life Questionnaire at inclusion, 2, 4, 6 and 12 months. Setting: Eight Norwegian outpatient cancer clinics. Participants: Patients ⩾70 years with solid tumours referred for palliative or curative systemic medical cancer treatment. Results: Among 288 patients included, 140 (49%) were frail and 148 (51%) non-frail. Frail patients consistently reported poorer scores on all functioning and symptom scales. Independent of age, gender and major cancer-related factors, frail patients had significantly poorer physical functioning and global quality of life during follow-up, and opposed to non-frail patients they had both a clinically and statistically significant decline in physical functioning from baseline until 12 months. Conclusions: Geriatric assessment identifies frail patients with increased risk of physical decline, poor functioning and high symptom burden during and following cancer treatment. Frail patients should therefore receive early supportive or palliative care.

Premature Aging in Young Cancer Survivors.

Advances in early detection, treatment, and supportive care have resulted in an estimated 16 million cancer survivors who are alive in the United States today. Outcomes have notably improved for children with cancer as well as young adults with hematologic malignancies due, in part, to the intensification of cancer treatment, including the use of hematopoietic cell transplantation. Emerging evidence suggests that these cancer survivors are at risk for premature aging, manifesting as early onset of chronic health conditions and a higher risk of mortality compared with the general population. Although the pathophysiology of premature aging in these survivors has not been fully elucidated, emerging concepts in aging research could help shed light on this phenomenon. Longitudinal studies are needed to better characterize aging in these survivors, setting the stage for much-needed interventions to halt the trajectory of accelerated aging. These efforts will be enhanced through collaborations between translational researchers, clinical oncologists, primary care providers, geriatricians, patient caretakers, and other stakeholders committed to improving the lives of the growing population of survivors.

Case based review: Toxicology on the Acute Medical Unit

Accidental and intentional poisoning from prescribed, illicit and organic substances remains a major cause of morbidity and mortality worldwide and accounts for just under 1% of the total number of NHS hospital admissions, or around 170,000, a year in the UK. A knowledge of the constellation of signs and symptoms that constitute specific poisonings (referred to as toxidromes) may enable early empirical decontamination, antidote administration, enhanced elimination and supportive care, and may also help to predict the clinical course. This paper presents a series of clinical vignettes to demonstrate emerging presentations in toxicology to help inform the practice of Acute Physicians, who alongside colleagues in Emergency Medicine and Critical Care, are at the front line of diagnosing and treating poisoned patients.

Hyponatremia with Rhabdomyolysis - Unusual Presentation of Pituitary Apoplexy

Hyponatremia is increasingly being identified among hospitalized patients. It significantly alters outcome either by itself or by inappropriate correction. We report a 29-year-old man, who presented to the out-patient services with headache of 1 week and projectile vomiting of 2 days. He also had cramps in calf since a day. Had no fever and had received intramuscular injection for calf pain. Clinical examination including fundoscopy were normal except for irritability and calf tenderness. Blood chemistry and haematology were normal, except for hyponatremia (110 m Eq/L) and elevated CPK (creatine phosphokinase). SIADH was considered as he was euvolemic with low serum osmolality and high urine osmolality. Further evaluation showed hypoadrenalism and hypothyroidism suggestive of hypopituitarism. Subsequent MRI of sella revealed a 1 cm3 cystic mass with features of haemorrhage. Pituitary apoplexy with hypopituitarism was definitive, considering the acute presentation. Supplementation of steroids and thyroxine along with sodium correction improved him symptomatically. Trans-sphenoidal resection of the sellar cystic lesion was performed. Often a good clinical history, assessment and judicious investigations can identify the cause for hyponatremia. Rhabdomyolysis is known to occur in severe hyponatremia and adrenal insufficiency as with the present case. In literature, there are reports of pituitary apoplexy presenting with rhabdomyolysis and hyponatremia. Pituitary apoplexy is a medical emergency which requires early identification, hormonal supplementation and supportive care for better outcome.&#x0D; J MEDICINE JUL 2019; 20 (1) : 49-51

Respiratory Viral Infections in Patients With Cancer or Undergoing Hematopoietic Cell Transplant.

Survival rates for pediatric cancer have steadily improved over time but it remains a significant cause of morbidity and mortality among children. Infections are a major complication of cancer and its treatment. Community acquired respiratory viral infections (CRV) in these patients increase morbidity, mortality and can lead to delay in chemotherapy. These are the result of infections with a heterogeneous group of viruses including RNA viruses, such as respiratory syncytial virus (RSV), influenza virus (IV), parainfluenza virus (PIV), metapneumovirus (HMPV), rhinovirus (RhV), and coronavirus (CoV). These infections maintain a similar seasonal pattern to those of immunocompetent patients. Clinical manifestations vary significantly depending on the type of virus and the type and degree of immunosuppression, ranging from asymptomatic or mild disease to rapidly progressive fatal pneumonia Infections in this population are characterized by a high rate of progression from upper to lower respiratory tract infection and prolonged viral shedding. Use of corticosteroids and immunosuppressive therapy are risk factors for severe disease. The clinical course is often difficult to predict, and clinical signs are unreliable. Accurate prognostic viral and immune markers, which have become part of the standard of care for systemic viral infections, are currently lacking; and management of CRV infections remains controversial. Defining effective prophylactic and therapeutic strategies is challenging, especially considering, the spectrum of immunocompromised patients, the variety of respiratory viruses, and the presence of other opportunistic infections and medical problems. Prevention remains one of the most important strategies against these viruses. Early diagnosis, supportive care and antivirals at an early stage, when available and indicated, have proven beneficial. However, with the exception of neuraminidase inhibitors for influenza infection, there are no accepted treatments. In high-risk patients, pre-emptive treatment with antivirals for upper respiratory tract infection (URTI) to decrease progression to LRTI is a common strategy. In the future, viral load and immune markers may prove beneficial in predicting severe disease, supporting decision making and monitor treatment in this population.

Pain in patients with newly diagnosed or relapsed acute leukemia.

Acute leukemia (AL) is associated with substantial morbidity and mortality. We assessed the prevalence and correlates of pain in patients with newly diagnosed or relapsed AL. Patients with newly diagnosed or relapsed AL admitted to a comprehensive cancer center completed the Memorial Symptom Assessment Scale (MSAS), which assesses prevalence, severity, and distress associated with pain and other symptoms. Factors associated with severe pain were assessed using logistic regression. Two raters completed chart reviews in duplicate for patients with severe pain (MSAS severity ≥ 3/4) to determine the site of pain. Three hundred eighteen patients were recruited from January 2008 to October 2013: 245 (77.0%) had acute myeloid or acute promyelocytic leukemia (AML/APL) and 73 (23.0%) had acute lymphoblastic leukemia (ALL); 289 (90.9%) were newly diagnosed and 29 (9.1%) had relapsed disease. Pain was reported in 156/318 (49.2%), of whom 55/156 (35.3%) reported severe pain (≥ 3/4). Pain was associated with all psychological symptoms (all p < 0.005) and some physical symptoms. Severe pain was associated with younger age (p = 0.02), worse performance status (p = 0.04), ALL diagnosis (p = 0.04), and time from onset of chemotherapy (p = 0.03), with pain peaking at 4weeks after chemotherapy initiation. The most common sites of severe pain were oropharynx (22; 40%), head (12; 21.8%), and abdomen (11; 20%). Only 3 patients (0.9%) were referred to the symptom control/palliative care team during the month prior to or following assessment. Pain is frequent, distressing, and predictable in patients undergoing induction chemotherapy for AL. Further research is needed to assess the efficacy of early supportive care in this population.

Early Cytomegalovirus Reactivation and Donor Constellation Reduce Early and Late Relapse Incidence of Acute Myeloid Leukemia in a Long-Term Study

IntroductionAfter allogeneic cell transplantation (HCT) for acute myeloid leukemia (AML) relapse remains the main cause of morbidity and mortality. Relapse rates directly translate into patients' overall survival. The connection between early human cytomegalovirus (CMV) replication and reduced leukemic recurrence has first been established by this group (Elmaagacli et. al. Blood 2011), using a pp65-antigenemia assay and confirmed by Green et al. (Blood 2013), Takenaka et al. (BBMT 2015) and others. In a more recent study by Teira et al. (Blood 2016) using PCR to detect reactivation, this effect has been questioned and the controversy remains probably due to methodological differences between studies.MethodsPatients with AML received allogeneic HCT at the Department of Bone Marrow Transplantation of the University Hospital Essen between 10/1997 and 10/2017. All patient-, donor-, HCT- and virology data was prospectively documented and retrospectively analyzed. The immunosuppressive regimen consisted of cyclosporine A and methotrexate. The conditioning was according to physician's choice and included only non-anti-thymocyte globuline (ATG) conditioning regimens. Early supportive and follow-up care was identical for all patients. Patients were followed for up to 60 months. Surviving patients were censored at last follow-up date. Competing risk analysis was performed for calculating cause-specific relapse-incidences with non-relapse mortality as competing risk. CMV titers were measured at the Department of Virology using quantitative PCR (qPCR) and a pp65 antigenemia assay. CMV reactivation was defined as a replication of >500 CMV copies per ml EDTA blood or as >25 pp65 antigen expressing cells per 5×105 white blood cells. If several CMV reactivation episodes occurred, only the interval to the first episode after HCT was analyzed.ResultsA total of 420 consecutive adult patients (median age, 48 years; range, 16-73 years) with AML and HCT were included for analysis. Over 60 months of follow-up, cumulative incidence of CMV reactivation was detected in 28% of patients and AML relapsed in 34%. In this cohort, the sensitivity of qPCR or pp65 detection methods did not differ (p=0.35) with regard to the incidence of CMV reactivation. CMV reactivation associated with significantly reduced AML relapse risk. The relapse incidence (RI) for patients with CMV reactivation was 0.18 (95% Confidence interval (CI), 0.12-0.25) compared to 0.41 (95% CI, 0.35-0.46) for patients without CMV reactivation (p<0.0001). This significant difference was reproduced for prognostic AML subgroups in first complete remission (RI, 0.14 with CMV reactivation versus 0.35 without; p=0.02) and for higher risk AML (RI, 0.20 versus 0.45; p<0.0001). Notably, donor-recipient serostatus constellation significantly (p=0.005) associated with AML relapse reduction, independently of CMV reactivation. CMV positive donors had a RI of 0.40 (95% CI, 0.33-0.46) compared to 0.28 in CMV negative donors (95% CI, 0.22-0.34).DiscussionThis new PCR dataset confirms previous reports (Elmaagacli et al. 2011; Takenaka et al. 2015) of an independent reduction of AML relapse risk after CMV reactivation, using qPCR detection in a homogeneous population of AML patients. While the association between CMV reactivation and early relapse (< day+100) has also been confirmed by Green et al. (Blood 2013) and relapse (>day +100) by Takenaka et al. (BBMT 2015), our data shows that late relapse (>24 months) may occur in patients without CMV reactivation. While the aforementioned studies exclusively used pp65 antigenemia titers as a determinant of CMV reactivation, Teira et al. (Blood 2016) analyzed PCR samples. The sensitivity of CMV reactivation using PCR or pp65 antigen titers was identical in our dataset. With regard to the on-going controversy on the role of CMV reactivation and AML relapse, this data shows a reduction of relapse in the quantitative PCR age. [Display omitted] DisclosuresTurki:Neovii Biotech: Other: subsidies for the costs of travel. Beelen:Medac: Consultancy, Other: Travel Support.

An enigmatic case of undiagnosed severe diarrhoea post living donor liver transplant

Graft versus Host Disease (GVHD) after orthotopic liver transplant (OLT), although rare, carries >80% mortality. Early diagnosis, prompt treatment, and aggressive supportive care are imperative to potentially reverse this otherwise fatal ailment. We describe a case of severe diarrhoea post living donor OLT who was diagnosed with acute GVHD. Addition of oral budesonide therapy to systemic corticosteroid therapy controlled the symptoms of diarrhoea.

Veterinary care of guinea pigs. Part 1: husbandry, stabilisation and diagnostics

Guinea pigs (Cavea porcellus) are popular pets within the UK. Owner expectations regarding advice and treatment for this species is increasing, and they may be presented to the veterinary clinic both for routine health checks and for treatment of illnesses. Husbandry should be based on their natural history, including their social requirements, temperature requirements, and grass or hay-based diet. Being prey species, they often hide signs of illness, so may present relatively late in a disease process. Early and aggressive supportive care is therefore essential.

P1.16-02 Support and Information Needs for Patients with NSCLC Receiving Concurrent Chemo-Radiotherapy: Findings from the INSIGHT Study

The curative intent pathway for patients with non-small cell lung cancer (NSCLC) is complex and burdensome. Concurrent chemotherapy and radiotherapy (chemo-radiotherapy) is used as first line treatment for inoperable stage 3 cancer,and requires the patient to attend multiple investigational procedures, separate appointments for chemotherapy and radiotherapy, intensive monitoring during treatment and multiple follow-up visits post treatment for up to 5 years to monitor late-toxicities and disease recurrence. The aims of this study are to identify the information needs of patients and their carers at key points along the treatment pathway and the preferred methods for information provision. A grant was awarded by the NLCFN to fund this patient experience, qualitative research study. Semi-structured interviews were conducted with 15 patients, and their carer dyads where appropriate, recruited from a cancer centre in Manchester, U.K. Data collection is now complete with 15 patients recruited, of whom 6 were interviewed with a carer dyad. Thematic analysis is on-going and has been employed inductively to identify some of the emerging themes and key issues from the data collected. These include; preferred means of receiving information and level of information given, burden of treatment and earlier access to supportive care, information about life after treatment and the after effects of treatment, and preferred methods to access appropriate support. Further research is needed into the on-going needs of this patient cohort and data collection so far highlights areas for consideration when providing information to this patient cohort. Emerging themes highlight that a specific booklet on concurrent chemo/radiotherapy would be preferred, covering all aspects of treatment, including a personalised treatment plan to include, where relevant mask wearing, the impact of side effects of treatment and how assess support. Early indications are that patients prefer a combination of verbal, written and visual information giving. Collaboration work to link these patients on the concurrent treatment pathway in with early supportive care is optimal. Implementation of this service as part of the Concurrent treatment pathway will commence as a pilot study in July 2018, to assess the impact of earlier intervention to manage disease burden and treatment side effects, with an aim to reduce hospital admissions. The evidence suggests further work is needed to improve information giving and support to these patients both pre and post treatment. Additional advice is required to support proactive management, to enhance recovery, whilst addressing the fear and anxiety patients and carers experience due to uncertain outcomes.

3. An enigmatic case of undiagnosed severe diarrhoea post living donor liver transplant

Background and Aims: Graft versus Host Disease (GVHD) after orthotopic liver transplant (OLT), although rare, carries >80% mortality. Early diagnosis, prompt treatment, and aggressive supportive care are imperative to potentially reverse this otherwise fatal ailment. We describe a case of recurrent severe diarrhoea post living donor OLT who was diagnosed with acute GVHD. Case Summary: A 56 year old lady underwent an uneventful (swap) living donor OLT for Hepatitis C related chronic liver disease with multifocal hepatocellular carcinoma. Initial immunosuppression consisted of tacrolimus, mycophenolate mofetil and prednisolone. At ten weeks post- transplantation, sirolimus was introduced and Tacrolimus tapered gradually. At 78 and 84 weeks post-transplantation she had two episodes of acute cellular rejection treated with pulse methylprednisolone therapy. She developed profuse watery painless diarrhoea with significant nocturnal symptoms at 90 weeks post-transplantation, for which she was admitted on several occasions. Multiple stool examinations were bland (no pus cells, red blood cells, mucus, ova and cysts), negative for cryptosporidium and clostridium difficile (antigen + toxin) and there was no Cytomegalovirus viremia. Laboratory parameters revealed mild anemia, thrombocytopenia, hypoalbuminemia and transaminitis. Celiac serology was negative. Every time her symptoms settled with intravenous fluids and antibiotics, only to recur within few days. An upper gastrointestinal endoscopy and duodenal biopsy was normal. Random normal appearing terminal ileum and colonic mucosal biopsies revealed mild active GVHD. Lamina propria showed mild chronic inflammatory cell infiltrate along with lymphoid aggregates. Few crypts demonstrated apoptosis (Fig. 1). There were no crypt dropouts, cryptitis or crypt abscesses (GVHD grade I). She was started on oral budesonide therapy. Her symptoms responded briskly and diarrhoea subsided. At six months follow-up, she was completely asymptomatic. Conclusions: This is the first case of GVHD with isolated gastrointestinal manifestations post OLT to be reported from India and treated successfully with oral budesonide. The authors have none to declare.