scholarly journals Personalised Follow-up Program after Acute Phase of Treatment in Oncology/Hematology Patients Towards Early Intervention, Better Care and Quality of Life Improvement: Results from Pasca Pilot Study

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 5817-5817
Author(s):  
Mauricette Michallet ◽  
Mohamad Sobh ◽  
Romain Buono ◽  
Solene Poirey ◽  
Isabela Pascu ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Risk Factors ◽  
Pilot Study ◽  
Acute Phase ◽  
Family Doctor ◽  
Second Cancer ◽  
The Family ◽  
Life Improvement

Advances in diagnosis and treatment have helped increase cure rates for many cancers. However, the disease and its treatments are often accompanied by short-, mid- and long-term organic and psychosocial sequelae and increased risk of second cancer, adding to that, all pre-existing comorbidities, lifestyle risks and hereditary factors. At the Centre Leon Berard Cancer center, we launched a project named PASCA (Parcours de Sante au cours du Cancer) that aims at structuring and optimizing a follow-up schedule for patients suffering from breast cancer, testicular germ tumor, acute leukemia, lymphoma or myeloma, as well as patients who received hematopoietic stem cell transplantations (HSCT). The main objective of the program is the early detection and specific management of risk factors for second cancer as well as sequelae management after the acute treatment phase with the final objective of quality of life improvement. Follow-up and evaluation are done through the establishment of a multidisciplinary organic assessment, anthropometric and physical fitness, psychic and socio-professional evaluation, the aim is to establish a score for each assessment, complementary to the specific oncology and hematology monitoring, that allows later to establish a personalized and adapted sequelae management and prevention of complications that could significantly impact the patient quality of life but also compromise the optimal management of the malignant disease. Patients were referred to PASCA by the oncologist/hematologist after being discharged from the acute phase of treatment, an information sheet about the program was given as well as a package containing different questionnaires to capture information about risk factors, general health, social status, quality of life and others. At the same time a series of medical laboratory requests were ordered to get a full medical assessment. Based on the questionnaires/medical evaluation a score was given for each type of assessment. Score 0 means the patients needs only a simple follow-up, score 1 means the patient needs to be followed by the family doctor for the specific issue, and score 2 means there is a need for specialist intervention. We put together a network of internal medicine or organ specific doctors in addition to fitness-physiotherapy specialist as well as many other specialists available to intervene for patients with score 2. We started in Hematology a pilot phase that included non-Hodgkin lymphomas (NHL, N=27) and multiple myelomas (MM, N=27) patients, 15 (28%) females and 39 (72%) males. Median age at evaluation was 60 years (range: 56-65), all patients except 8 (all NHL) received autologous HSCT. Here we present some of the most relevant PASCA assessments with the different scores: nephrology (0: 94%, 1:6%), cardiology (0:27%, 1:63%, 2:10%), hepatology (0:49%, 1:42%, 2:9%), pneumology (0:41%, 1:39%, 2:20%), sexual (0:67%, 1:14%, 2:9%), dermatology (0:78%, 1:13%, 2:9%), pain (0:43%, 1:31%, 2:26%), gynecology (0:56%, 2:44%), endocrinology (0:67%, 1:31%, 2:2%), malnutrition (0:75%, 1:8%, 2:17%), obesity (0:54%, 1:20%, 2:26%), flexibility (0:46%, 1:27%, 2:27%), employment (0:76%, 2:24%), fatigue (0:24%, 1:2%, 2:73%), anxiety (0:56%, 1:22%, 2:22%), and depression (0:80%, 1:10%, 2:10%). In addition, a list of FACT questionnaires was collected for all patients as baseline evaluation and will be compared later during follow-up. During the PASCA consult visit, patient was informed about his different assessment results and in case of any score 1 or 2, a referral to the family doctor or a specialist was requested. Planned 6- and 12-months evaluation are ongoing to evaluate the potential improvement after PASCA program. Our results from this pilot study showed a real need for specific follow-up on the medical level but also on social/well being level that is in most of the cases given less priority when the patient is seen in oncology/hematology clinic. We noticed a significant positive feedback from patients included in this program and we expect to see a drastic improvement on the medical, psychological and social level as well as on quality of life. We are starting the full PASCA program that will include also patients with breast cancers, germ cells cancers and sarcoma. A protocol for a randomized multicentric study is in preparation and will allow to evaluate the impact and the importance of such program in patients with malignant diseases. Disclosures No relevant conflicts of interest to declare.

scholarly journals Bedside optical coherence tomography for Terson’s syndrome screening in acute subarachnoid hemorrhage: a pilot study

2019 ◽  
Vol 130 (2) ◽  
pp. 517-524 ◽  
Author(s):  
Ciro Ramos-Estebanez ◽  
Maryo Kohen ◽  
Jonathan Pace ◽  
Alireza Bozorgi ◽  
Sunil Manjila ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Optical Coherence Tomography ◽  
Subarachnoid Hemorrhage ◽  
Pilot Study ◽  
Acute Phase ◽  
Depressed Mood ◽  
Potential Role ◽  
Optical Coherence

OBJECTIVEApproximately 10% of patients with subarachnoid hemorrhage (SAH) become permanently, legally blind. The average cost of lifetime support and unpaid taxes for each blind person amounts to approximately $900,000. This study evaluates the feasibility and potential role of bedside optical coherence tomography (OCT) in Terson’s syndrome (TS) in patients with acute SAH (aSAH) and its potential role in blindness prevention.METHODSThe authors conducted an open-label pilot study, in which 31 patients with an angiographic diagnosis of aSAH were first screened for TS with dilated funduscopy and then with OCT in the acute phase and at 6-week follow-up visits. Outpatient mood assessments (Patient Health Questionnaire–depression module, Hamilton Depression Scale), and quality of life general (NIH Patient-Reported Outcomes Measurement Information System) and visual scales (25-item National Eye Institute Visual Functioning Questionnaire) were measured at 1 and 6 weeks after discharge. Exclusion criteria included current or previous history of severe cataracts, severe diabetic retinopathy, severe macular degeneration, or glaucoma.RESULTSOCT identified 7 patients with TS, i.e., a 22.6% incidence in our aSAH sample: 7 in the acute phase, including a large retinal detachment that was initially missed by funduscopy and diagnosed by OCT in follow-up clinic. Dilated retinal funduscopy significantly failed to detect TS in 4 (57.1%) of these 7 cases. Intraventricular hemorrhage was significantly more common in TS cases (85.7% vs 25%). None of the participants experienced any complications from OCT examinations. Neither decreased quality of life visual scale scores nor a depressed mood correlated with objective OCT pathological findings at the 6-week follow-up after discharge. There were no significant mood differences between TS cases and controls.CONCLUSIONSOCT is the gold standard in retinal disease diagnosis. This pilot study shows that bedside OCT examination is feasible in aSAH. In this series, OCT was a safe procedure that enhanced TS detection by decreasing false-negative/inconclusive funduscopic examinations. It allows early diagnosis of macular holes and severe retinal detachments, which require acute surgical therapy to prevent legal blindness. In addition, OCT aids in ruling out potential false-positive visual deficits in individuals with a depressed mood at follow-up.

scholarly journals Pain relief and quality-of-life improvement after spinal cord stimulation in painful diabetic polyneuropathy: a pilot study

2012 ◽  
Vol 109 (5) ◽  
pp. 837 ◽  
Author(s):  
W.A. Pluijms ◽  
R Slangen ◽  
M Bakkers ◽  
C.G. Faber ◽  
I.S.J. Merkies ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Spinal Cord ◽  
Pilot Study ◽  
Pain Relief ◽  
Spinal Cord Stimulation ◽  
Diabetic Polyneuropathy ◽  
Life Improvement

scholarly journals Long-Term Patient Satisfaction and Quality of Life After Breast-Conserving Therapy: A Prospective Study Using the BREAST-Q

2021 ◽  
Author(s):  
Ilona Stolpner ◽  
Jörg Heil ◽  
Fabian Riedel ◽  
Markus Wallwiener ◽  
Benedikt Schäfgen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Risk Factors ◽  
Patient Satisfaction ◽  
Repeated Measures ◽  
Aesthetic Surgery ◽  
Well Being ◽  
Breast Conserving Therapy ◽  
Patient Reported

Abstract Background Poor patient-reported satisfaction after breast-conserving therapy (BCT) has been associated with impaired health-related quality of life (HRQOL) and subsequent depression in retrospective analysis. This prospective cohort study aimed to assess the HRQOL of patients who have undergone BCT using the BREAST-Q, and to identify clinical risk factors for lower patient satisfaction. Methods Patients with primary breast cancer undergoing BCT were asked to complete the BREAST-Q preoperatively (T1) for baseline evaluation, then 3 to 4 weeks postoperatively (T2), and finally 1 year after surgery (T3). Clinicopathologic data were extracted from the patients’ charts. Repeated measures analysis of variance (ANOVA) was used to determine significant differences in mean satisfaction and well-being levels among the test intervals. Multiple linear regression was used to evaluate risk factors for lower satisfaction. Results The study enrolled 250 patients. The lowest baseline BREAST-Q score was reported for “satisfaction with breast” (mean, 61 ± 19), but this increased postoperatively (mean, 66 ± 18) and was maintained at the 1 year follow-up evaluation (mean, 67 ± 21). “Physical well-being” decreased from T1 (mean, 82 ± 17) to T2 (mean, 28 ± 13) and did not recover much by T3 (mean, 33 ± 13), being the lowest BREAST-Q score postoperatively and in the 1-year follow-up evaluation. In multiple regression, baseline psychosocial well-being, body mass index (BMI), and type of incision were risk factors for lower “satisfaction with breasts.” Conclusion Both the aesthetic/surgery-related and psychological aspects are equally important with regard to “satisfaction with breasts” after BCT. The data could serve as the benchmark for future studies.

scholarly journals Hydroxycarbamide Plus Aspirin Versus Aspirin Alone in Patients With Essential Thrombocythemia Age 40 to 59 Years Without High-Risk Features

2018 ◽  
Vol 36 (34) ◽  
pp. 3361-3369 ◽  
Author(s):  
Anna L. Godfrey ◽  
Peter J. Campbell ◽  
Cathy MacLean ◽  
Georgina Buck ◽  
Julia Cook ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Risk Factors ◽  
Platelet Count ◽  
High Risk ◽  
Vascular Events ◽  
End Point ◽  
High Risk Factors ◽  
Patient Reported

Purpose Cytoreductive therapy is beneficial in patients with essential thrombocythemia (ET) at high risk of thrombosis. However, its value in those lacking high-risk features remains unknown. This open-label, randomized trial compared hydroxycarbamide plus aspirin with aspirin alone in patients with ET age 40 to 59 years and without high-risk factors or extreme thrombocytosis. Patients and Methods Patients were age 40 to 59 years and lacked a history of ischemia, thrombosis, embolism, hemorrhage, extreme thrombocytosis (platelet count ≥ 1,500 × 109/L), hypertension, or diabetes requiring therapy. In all, 382 patients were randomly assigned 1:1 to hydroxycarbamide plus aspirin or aspirin alone. The composite primary end point was time to arterial or venous thrombosis, serious hemorrhage, or death from vascular causes. Secondary end points were time to first arterial or venous thrombosis, first serious hemorrhage, death, incidence of transformation, and patient-reported quality of life. Results After a median follow-up of 73 months and a total follow-up of 2,373 patient-years, there was no significant difference between the arms in the likelihood of patients reaching the primary end point (hazard ratio, 0.98; 95% CI, 0.42 to 2.25; P = 1.0). The incidence of significant vascular events was low, at 0.93 per 100 patient-years (95% CI, 0.61 to 1.41). There were also no differences in overall survival; in the composite end point of transformation to myelofibrosis, acute myeloid leukemia, or myelodysplasia; in adverse events; or in patient-reported quality of life. Conclusion In patients with ET age 40 to 59 years and lacking high-risk factors for thrombosis or extreme thrombocytosis, preemptive addition of hydroxycarbamide to aspirin did not reduce vascular events, myelofibrotic transformation, or leukemic transformation. Patients age 40 to 59 years without other clinical indications for treatment (such as previous thrombosis or hemorrhage) who have a platelet count < 1,500 × 109/L should not receive cytoreductive therapy.

scholarly journals Impact of Alzheimer’s disease on the family caregiver’s long-term quality of life: results from an ALSOVA follow-up study

2015 ◽  
Vol 25 (3) ◽  
pp. 687-697 ◽  
Author(s):  
Tarja H. Välimäki ◽  
Janne A. Martikainen ◽  
Kristiina Hongisto ◽  
Saku Väätäinen ◽  
Harri Sintonen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Follow Up Study ◽  
The Family

scholarly journals A Double Priming Induction Regimen for Acute Myeloid Leukemia with Inferior PS Among Resource Limited Areas

Blood ◽  
2018 ◽  
Vol 132 (Supplement 1) ◽  
pp. 5173-5173
Author(s):  
Stephen Liang ◽  
Siliang Chen ◽  
Xiaoli Huang ◽  
Zheyuan Qin ◽  
Sanbin Wang
Keyword(s):  
Quality Of Life ◽  
Acute Myeloid Leukemia ◽  
Pilot Study ◽  
Subcutaneous Injection ◽  
Myeloid Leukemia ◽  
Low Dose ◽  
Grade 3 ◽  
Acute Myeloid

Abstract The treatment options for patients with acute myeloid leukemia (AML) under inferior performance status (i.e. senior patients, MDS transformed AML, and patients with proven invasive fungal disease) are limited. The conventional "3+7" (idarubicin plus cytarabine) induction for those patients can be either too toxic, which leads to higher mortality rate, or requires prolonged recovery time thus raise medical cost. And the delay of consolidation may compromise outcome thus cause early relapse in such patients. Giving the rationale from the designing art of CPX-351, the prolonged IV time requirement for cytarabine, as well as mini-transplantation for AML treatment, at least in part, reflects the philosophy of a longer exposure to the chemo agent can be a more effective treatment approach for leukemia. On the other hand, the D-CAG protocol, which indicated an encouraging result for elderly patients with AML, indicated effectiveness of the strategy with reduced intensity. However, the cyto-toxic effect of decitabine with standard dose (20mg/m2) could still lead to severe treatment adverse events (AEs) thus raise the need of optimization of D-CAG regimen for patients with inferior PS. When considering the low dose hypo-methylation agent (HMA) can trigger the innate immunity response, the unique effect of homoharringtonine, as well as the effectiveness of CAG, we designed this DHCAG protocol following the principle of "longer exposure, lower intensity preceded by priming" and observed an unexpected excellent outcome with high CR rate, low induction failure and treatment mortality, as well as a higher cost effective value for patients with AML, when compared to "3+7" protocol, whom under inferior PS. From March 2016 - January 2018, we initiated this pilot study and investigated the safety and efficiency of this DHCAG protocol in patients with AML under poor PS. We enrolled 25 patients and administer the regimen as followings: i) G-CSF: 5μg/kg used when WBC <20×10^9/L at day 0-14 subcutaneous injection; ii) Decitabine: 6mg/m2 at day 0, 3, 6, 9, 12 iv drip; iii) Aclarubicin: 6mg/m2 at day 1-8 iv drip; iv) Homoharringtonine: 1mg/m2 at day 9-14 iv drip ( at day 9, if WBC >1*10^9/L then increase the dosage of homoharringtonine to 2mg/m2); iv) Cytarabine:10mg/m2 q12h at day 1-14 subcutaneous injection (if WBC >20*10^9/L then increase to 100mg/m2 by 24h CIV, or 50mg/m2 q12h by subcutaneous injection). The primary end point was complete hematologic remission, defined as a bone marrow blast cells ≤5%, Neutrophils in peripheral blood ≥1.0X109 /L, hemoglobin≥90g/L, and platelets ≥100X109/L and no any evidence of extramedullary leukemic infiltration; Secondary end points included numbers of adverse events, length of hospital stay, medical costs, and quality of life as measured with the use of the Functional Assessment of Cancer Therapy - General (FACT-G) questionnaire. Among the 25 patients in the study, 23 completed the induction therapy. And 21/25 patients had a hematologic complete remission after a median time of 19 days. Once complete remission had occurred, all 21 patients received post-remission treatment for another 5 cycles of DHCAG. Median follow-up was 14 months (range, 8 to 19) by June 2018. Interestingly, regardless of grade 3-4 myelo-suppression occurred all of our patients during induction, eight patients did not experienced grade 3-4 myelo-suppression during the following cycles. The median hospital stay is 22 days. The median of total medical costs for induction was $9,815 (range, $5,053 to $16,336) vs $14,705 for "3+7" induction protocol (history control. Data unpublished). Patients resumed their usual lifestyle during post-remission therapy, and their quality of life was rated as nearly normal on the FACT-G questionnaire. At the time of the last follow-up, seven patients had had a hematologic relapse. The results of our pilot study, in which we tested a priming based, low dose and longer exposure in 25 patients with AML under poor PS, showed that the treatment was safe, effective, and economical. A prospective multicenter, randomized trial comparing DHCAG with IA is now under way in China. Disclosures No relevant conflicts of interest to declare.

scholarly journals Health-related quality of life of COVID-19 survivors at 6 months after hospital discharge: a cohort study

2021 ◽  
Author(s):  
MeiXuan Lin ◽  
Liqun Huang ◽  
Danwen Zheng ◽  
Linjie Zhang ◽  
Bing Feng ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Risk Factors ◽  
Cognitive Function ◽  
Health Related Quality ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related

Abstract Background: COVID-19 is a multi-systemic disease that is highly contagious and pathogenic. The long-term consequences of it are not yet clear, as is whether society and life can return to a healthy state. Long-term assessment of their health-related quality of life (HRQoL) is essential. This study aimed to investigate HRQoL and its risk factors in COVID-19 survivors at a follow-up of 6-month. Methods: A multicenter cross-sectional survey was conducted among 192 COVID-19 patients with confirmed age ≥ 18 years who were discharged from various hospitals in Wuhan from January to April 2020. The demographic characteristics, clinical characteristics, and laboratory results of the study subjects were obtained from the hospital's medical records. Survivors' HRQoL was assessed using the Short Form 36 (SF-36), cognition was assessed using the ascertain dementia eight-item informant questionnaire (AD8), and survivors' pulmonary function were examined. All participants in this study completed the survey and testing at Hubei Provincial Hospital of Chinese and Western Medicine. SF-36 scores were compared with the Chinese norm, and logistic regression and multivariate analysis were used to investigate the factors affecting HRQoL in COVID-19 survivors. Results: SF-36 showed significant differences in HRQoL between COVID-19 survivors and the general Chinese population ( P< 0.05).Multiple linear regression demonstrated that age was negatively correlated with physical functioning (PF), role-physical limitation (RP) and social functioning (SF) ( P <0.05). Bodily pain (BP), vitality (VT), SF and role-emotional limitation (RE) were negatively correlated with females ( P <0.05). Length from discharge to follow‐up was positively correlated with PF and RP ( P <0.05). Abnormal cognitive function was negatively correlated with PF, RP, general health (GH), VT, SF, RE and mental health (MH) ( P <0.05). Abnormal Carbon Monoxide Diffusing Capacity (DLCO%<80%) was significantly negatively correlated with PF and SF ( P <0.05).In addition, there was a significant negative correlation between Coronary heart disease and RP, GH, VT and RE ( P <0.05).Logistic regression analysis demonstrated that age(OR 1.032) and AD8 scores (OR 1.203)were risk factors associated with a low physical component summary (PCS) score. Length from discharge to follow‐up (OR 0.971) was the protective factor for PCS score. Abnormal cognitive function (OR 1.543) was a significant determinant associated with a mental component summary (MCS)<50 in COVID-19 patients. Conclusions: The HRQoL of COVID-19 survivors remains to be improved at six-month follow-up. Future studies should track HRQoL in older adults, women, patients with abnormal DLCO, and abnormal cognitive function for a long time and provide them with rehabilitation advice and guidance.

scholarly journals Comprehensive and long-term surveys of COVID-19 sequelae in Japan, an ambidirectional multicentre cohort study: study protocol

2021 ◽  
Vol 8 (1) ◽  
pp. e001015
Author(s):  
Kensuke Nakagawara ◽  
Ho Namkoong ◽  
Hideki Terai ◽  
Katsunori Masaki ◽  
Takae Tanosaki ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Risk Factors ◽  
Acute Phase ◽  
Large Scale ◽  
Significant Proportion ◽  
Society Meeting ◽  
Health Related ◽  
Socioeconomic Consequences

IntroductionThe rapid spread of COVID-19 posed a global burden. Substantial number of people died of the disease in the acute phase of infection. In addition, a significant proportion of patients have been reported to suffer from post-acute phase symptoms, sequelae of COVID-19, which may negatively influence the quality of daily living and/or socioeconomic circumstances of the patients. However, no previous study has comprehensively and objectively assessed the quality of life of patients by using existing international scales. Further, evidence of socioeconomic consequences among patients with COVID-19 is scarce. To address the multidimensional issues from sequelae of COVID-19, evidence from comprehensive surveys beyond clinical perspectives is critical that investigates health, and social determinants of disease progression as well as socioeconomic consequences at a large scale.Methods and analysisIn this study, we plan to conduct a nationwide and comprehensive survey for the sequelae of COVID-19 in a total of 1000 patients diagnosed at 27 hospitals throughout Japan. This study will evaluate not only the health-related status of patients from clinical perspectives but also the Health-related Quality of Life (HRQoL) scores, socioeconomic status and consequences to discuss the sequelae of the disease and the related risk factors. The primary endpoint is the frequency of long-term complications of COVID-19 infection. The secondary endpoints are risk factors for progression to sequelae of COVID-19 infection. The study will provide robust and important evidence as a resource to tackle the issues from the sequelae of COVID-19 from the multi-dimensional perspectives.Ethics and disseminationThis trial was approved by the Keio University School of Medicine Ethics Committee (20200243, UMIN000042299). The results of this study will be reported at a society meeting or published in a peer-reviewed journal.

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