scholarly journals Experiences of Social Withdrawal: Why Aging Matters Among Individuals With Hemophilia Facing Unexpected Longevity

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 667-668
Author(s):  
Tam Perry ◽  
Sara Schwartz ◽  
Dana Francis ◽  
Charles Kaplan
Keyword(s):  
Social Withdrawal ◽  
Treatment Modalities ◽  
Telephone Interviews ◽  
Care Models ◽  
The Life Course ◽  
Donated Blood ◽  
And Coping ◽  
Long Term Survivors ◽  
First Time

Abstract For the first time, individuals with hemophilia are living beyond their 30s and 40s. This cohort, many of whom had been dependent on donated blood and contracted HIV and hepatitis, face unique challenges as they age with hemophilia and other conditions. Little is known about the experiences and health needs of these adults over the age of 40. Scientific advances have changed the life course of individuals who received earlier treatment modalities. Today, a person with hemophilia who has received preventative synthetic treatment can look forward to a long, healthy and active life. Semi-structured telephone interviews (n=32) were conducted with long-term survivors, family members, and professionals who supported these families. Findings include shame, fear and coping through social withdrawal in order to hide their hemophilia to avoid assumptions of HIV status. Analyzing unexpected longevity and why age matters for this historically isolated cohort, we explore appropriate care models.

scholarly journals Nutritional status and physical activity of childhood leukemia survivors

2014 ◽  
Vol 54 (2) ◽  
pp. 67
Author(s):  
Conny Tanjung ◽  
Johannes Bondan Lukito ◽  
Prima Dyarti Meylani
Keyword(s):  
Physical Activity ◽  
Nutritional Status ◽  
Childhood Leukemia ◽  
Lymphoblastic Leukemia ◽  
Induction Phase ◽  
Childhood All ◽  
Increased Risk ◽  
Long Term Survivors ◽  
First Time

Background Acute lymphoblastic leukemia (ALL), the mostcommon malignancy of childhood, has an overall cure rate ofapproximately 80%. Long-term survivors of childhood ALL areat increased risk for obesity and physical inactivity that may leadto the development of diabetes, dyslipidemia, metabolic syndrome,as well as cardiovascular dis eases, and related mortality in theyears following treatment.Objective To evaluate the physical activity and the propensityfor developing obesity longer term in ALL survivors.Methods This retrospective cohort study included all ALLsurvivors from Pantai Indah Kapuk (PIK) Hospital. We assessedtheir physical activity and nutritional status at the first time ofALL diagnosis an d at the time of interview.Results Subjects were 15 ALL survivors aged 7 to 24 years. Themedian fo llow up time was 6.4 years (range 3 to 10 years). Only2 out of 15 survivors were overweight and n one were obese.All survivors led a sedentary lifestyle. Most female subjectshad increased BMI, though most were not overweight/obese.Steroid therapy in the induction phase did not increase the riskof developing obesity in ALL survivors.Conclusion Lon g-term survivors of childh ood ALL do not meetphysical activity recommendations according to the CDC (Centersfor Disease Control). Howevei; steroid therapy do not seem tolead to overweight/obesity in ALL survivors.

scholarly journals Validation and characterization of a DNA methylation alcohol biomarker across the life course

2019 ◽  
Author(s):  
Paul Darius Yousefi ◽  
Rebecca Richmond ◽  
Ryan Langdon ◽  
Andrew Ness ◽  
Chunyu Liu ◽  
...  
Keyword(s):  
Dna Methylation ◽  
Parents And Children ◽  
Average Alcohol ◽  
Alcohol Biomarker ◽  
Audit Score ◽  
Potential Applications ◽  
The Life Course ◽  
Offspring Generation ◽  
First Time

AbstractRecently, an alcohol predictor was developed using DNA methylation at 144 CpG sites (DNAm-Alc) as a biomarker for improved clinical or epidemiologic assessment of alcohol-related ill health. We validate the performance and characterize the drivers of this DNAm-Alc for the first time in independent populations. In N=1,049 parents from the Avon Longitudinal Study of Parents and Children (ALSPAC) Accessible Resource for Integrated Epigenomic Studies (ARIES) at midlife, we found DNAm-Alc explained 7.6% of the variation in alcohol intake, roughly half of what had been reported previously, and interestingly explained a larger 9.8% of AUDIT score, a scale of alcohol use disorder. Explanatory capacity in participants from the offspring generation of ARIES measured during adolescence was much lower. However, DNAm-Alc explained 14.3% of the variation in replication using the Head and Neck 5000 (HN5000) clinical cohort that had higher average alcohol consumption. To investigate whether this relationship was being driven by genetic and/or earlier environment confounding we examined how earlier vs. concurrent DNAm-Alc measures predicted AUDIT scores. In both ARIES parental and offspring generations, we observed associations between AUDIT and concurrent, but not earlier DNAm-Alc, suggesting independence from genetic and stable environmental contributions. The stronger relationship between DNAm-Alcs and AUDIT in parents at midlife compared to adolescents despite similar levels of consumption suggests that DNAm-Alc likely reflects long-term patterns of alcohol abuse. Such biomarkers may have potential applications for biomonitoring and risk prediction, especially in cases where reporting bias is a concern.

Dentofacial development in long-term survivors of acute lymphoblastic leukemia: A comparison of three treatment modalities

Cancer ◽  
1990 ◽  
Vol 66 (12) ◽  
pp. 2645-2652 ◽  
Author(s):  
Andrew L. Sonis ◽  
Nancy Tarbell ◽  
Richard W. Valachovic ◽  
Richard Gelber ◽  
Molly Schwenn ◽  
...  
Keyword(s):  
Acute Lymphoblastic Leukemia ◽  
Lymphoblastic Leukemia ◽  
Treatment Modalities ◽  
Dentofacial Development ◽  
Long Term Survivors

scholarly journals Addressing Quality of Life Issues in Long Term Survivors of Head & Neck Cancer treated with Radiation Therapy

2015 ◽  
Vol 23 (1) ◽  
pp. 18-25
Author(s):  
Bishan Basu
Keyword(s):  
Quality Of Life ◽  
Radiation Therapy ◽  
Neck Cancer ◽  
Treatment Modalities ◽  
Head Neck Cancer ◽  
Life Issues ◽  
Long Term Survivors ◽  
Head Neck

The rapid advancement of curative treatment modalities has resulted in improvement of cure rates of head neck cancer leaving us with a larger number of long term survivors from the disease. Unfortunately, long term complications of therapy continue to hurt patients even after cure, compromising their quality of life. This is particularly true for the patients treated with primary radiation/chemo-radiation therapy, where so called organ preservation does not necessarily translate into preservation of organ function. Long term sequelae of treatment, particularly xerostomia and swallowing difficulties compromise the survivors’ quality of life. More studies, particularly suited to our clinical scenario, are warranted to address the quality of life issues in these patients, so that better evidence-based guidelines may be developed for their benefit.

Late effects in long-term survivors of high-grade non-Hodgkin's lymphomas.

1998 ◽  
Vol 16 (6) ◽  
pp. 2070-2079 ◽  
Author(s):  
T B Haddy ◽  
M A Adde ◽  
J McCalla ◽  
M J Domanski ◽  
M Datiles ◽  
...  
Keyword(s):  
Hepatitis C Virus ◽  
Hepatitis C ◽  
Late Effects ◽  
Cell Lymphoma ◽  
Left Ventricular ◽  
Treatment Modalities ◽  
High Grade ◽  
Hodgkin's Lymphomas ◽  
Long Term Survivors

PURPOSE To evaluate long-term survivors of high-grade non-Hodgkin's lymphomas (NHLs) for late effects and to attempt to assess the relative contributions of the primary treatment modalities to these late effects. PATIENTS AND METHODS Of 103 young survivors followed up for 1 to 20 years, 74 patients were interviewed and underwent various investigations, and an additional 12 patients were interviewed only. Of the 86 patients, 65 had previously suffered from small non-cleaved-cell lymphoma, 16 from lymphoblastic lymphoma, and five from large-cell lymphoma. RESULTS Left ventricular dysfunction was identified in eight of 57 (14.0%) patients who had received doxorubicin (DOX) in doses greater than 200 mg/m2, of whom four were symptomatic and four were asymptomatic. A ninth patient required a pacemaker. Of the 86 patients, 23 (26.7%) reported pregnancies, 18 of whom had 30 children. Two of the 86 (2.3%) patients developed second cancers. Other major late effects included posttransfusion viral hepatitis, eight patients; CNS toxicity, two patients; endocrine impairment, 14 patients; vitamin B12 deficiency, two patients; esophageal stricture, one patient; urinary tract problems, two patients; and musculoskeletal defects, three patients. Major late effects occurred in 11 of 21 (52.4%) patients who had received radiation as well as chemotherapy, eight of 22 (36.4%) patients who had surgical resections as well as chemotherapy, and 17 of 74 (23.0%) patients who had received chemotherapy alone. CONCLUSION The predominant major late effects observed were late cardiac toxicity related to DOX therapy and hepatitis C virus infection that presumably resulted from blood product transfusions administered before the introduction of screening for the hepatitis C virus. Fertility was not greatly impaired, and second malignancies were uncommon. No patient had clinically significant impairment of growth. Radiation appeared to increase the likelihood of late effects.

Sexuality and fertility in long-term survivors of testicular cancer.

1997 ◽  
Vol 15 (4) ◽  
pp. 1444-1448 ◽  
Author(s):  
Y Arai ◽  
M Kawakita ◽  
Y Okada ◽  
O Yoshida
Keyword(s):  
Sexual Dysfunction ◽  
Testicular Cancer ◽  
Treatment Modalities ◽  
Retroperitoneal Lymph Node Dissection ◽  
Treatment Groups ◽  
Significant Difference ◽  
Chemotherapy Patients ◽  
The Impact ◽  
Long Term Survivors

PURPOSE We assessed the impact of different treatment modalities on sexuality and fertility in long-term survivors of testicular cancer. MATERIALS AND METHODS The sample consisted of 85 testicular cancer patients, of whom 19 had undergone chemotherapy with retroperitoneal lymph node dissection (RPLND), 15 had received chemotherapy only, 42 had received infradiaphragmatic radiotherapy, and nine had received surveillance therapy. The questionnaire reported sexual function, marital status, and issues related to fertility and childbearing. RESULTS One fourth to one half reported some type of sexual impairment in each group. The only significant difference was that approximately 70% of men with RPLND reported inability of ejaculation and a greater decline in semen volume, which is expected. The most striking finding is that the rates and nature of sexual dysfunction of surveillance patients were similar to other treatment groups, except for ejaculatory function. The highest rates of infertility distress were observed in chemotherapy patients. CONCLUSION These data suggest that sexual dysfunction and infertility represent the major persisting side effects, even years after diagnosis. The hypothesis that surveillance patients have fewer sexual problems is not upheld in this study.

Long-term survivorship in patients (pts) with metastatic renal cell cancer (mRCC): A retrospective study from the MD Anderson Cancer Center (MDACC).

2015 ◽  
Vol 33 (7_suppl) ◽  
pp. 510-510 ◽  
Author(s):  
Matthew T. Campbell ◽  
Amishi Yogesh Shah ◽  
Neda Hashemi ◽  
Kirtan Das Nautiyal ◽  
Paul Gettys Corn ◽  
...  
Keyword(s):  
Medical Records ◽  
Cell Cancer ◽  
Cancer Center ◽  
Kaplan Meier ◽  
Baseline Information ◽  
Baseline Characteristics ◽  
Md Anderson ◽  
And Coping ◽  
Long Term Survivors

510 Background: The overall survival (OS) of pts with mRCC has improved since the introduction of targeted therapies (TT). We sought to characterize the baseline characteristics, management, and outcomes of pts who survived > 4 yrs from date of diagnosis of metastatic disease (Met Dx). Methods: We retrospectively reviewed medical records of consecutive pts who were diagnosed with mRCC and evaluated at MDACC from 1/1/2001 to 12/31/2008. Descriptive statistics and Kaplan-Meier methods were used to estimate OS times. Results: For 729 mRCC pts identified, median OS was 2.3 years (95% CI: 2.1, 2.5); 219 (30.0%) pts have survived >4 yrs, and 167 (22.9%) pts have survived >5 yrs. For pts diagnosed in the cytokine era (2000 to 2004) median OS was 2.3 yrs (95%CI: 2-2.6) compared to median OS 2.4 yrs (95%CI: 2.0-3.0) for pts diagnosed in the targeted era (2005-2008). Of the 219 pts, 205 pts had adequate baseline information. Conclusions: Since 2000, approximately 30% of mRCC pts have survived >4 yrs and 23% have survived >5 yrs. Patients spent more time on treatment in the targeted compared to the cytokine era. Understanding the health problems and costs long-term survivors face is essential to devise therapeutic and coping strategies. [Table: see text] [Table: see text] [Table: see text]

Side Effects and Cancer-Related Stress Determine Quality of Life in Long-Term Survivors of Testicular Cancer

2005 ◽  
Vol 23 (13) ◽  
pp. 3061-3068 ◽  
Author(s):  
Arnstein Mykletun ◽  
Alv A. Dahl ◽  
Carl Fredrik Haaland ◽  
Roy Bremnes ◽  
Olav Dahl ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Side Effects ◽  
Testicular Cancer ◽  
Treatment Modality ◽  
Treatment Modalities ◽  
Sf 36 ◽  
Related Stress ◽  
Long Term Survivors

Purpose The prevalence of long-term survivors after treatment for testicular cancer (TC) is increasing, and most studies display normal or only slightly reduced quality of life (QOL) in TC survivors (TCSs). Impaired QOL is claimed to be associated with treatment modality and its side effects, although most studies in this field can be criticized for various methodologic shortcomings. We wanted to examine variation in long-term QOL in TCSs in relation to TC treatment modality, side effects, and TC-related stress in a large population. Patients and Methods QOL, side effects, and TC-related stress were self-rated by a questionnaire at a mean of 11 years of follow-up in 1,409 TCSs treated from 1980 to 1994. Norm data was obtained from 2,678 males who were representative of the general population. QOL was measured with the Short Form-36 (SF-36), and TC-related stress was measured with the Impact of Event Scale. Results There were no clinically relevant differences in QOL between TCSs and age-adjusted norm data, although there was a slightly lowered SF-36 Physical Component Summary Score in TCSs. Variation of QOL in TCSs was related to self-reported side effects and TC-related stress but not to TC treatment modality. A significant association was found between side effects and TC-related stress. Conclusion TCSs do not suffer long term from reduced QOL, and only minor differences in QOL were found between different treatment modalities. TCSs who report more side effects or TC-related stress have increased risk for reduced QOL, but these associations are not explained by TC treatment modalities. Further QOL research in this area should explore vulnerability factors for side effects and TC-related stress.

scholarly journals Near-normal aerobic capacity in long-term survivors after lung transplantation

2020 ◽  
pp. 00381-2020
Author(s):  
Berta Saez-Gimenez ◽  
Miriam Barrecheguren ◽  
Maria Antònia Ramon ◽  
Alba Gomez-Garrido ◽  
Carlos Bravo ◽  
...  
Keyword(s):  
Lung Transplantation ◽  
Exercise Capacity ◽  
Cardiopulmonary Exercise Testing ◽  
Mean Value ◽  
Peak Exercise ◽  
Cross Sectional ◽  
Euroqol 5D ◽  
Long Term Survivors ◽  
First Time

The clinical course of lung transplantation (LT) is diverse: some patients present chronic lung allograft dysfunction (CLAD) and progressive decline in pulmonary function but others, maintain normal spirometric values and active live.Objectivesto elucidate whether long-term LT survivors with normal spirometry achieve normal exercise capacity, and to identify predictive factors of exercise capacity.Methodscross-sectional multicentre study where bilateral LT recipients who survived at least 10 years after LT, with normal spirometry, no diagnosis of CLAD and mMRCs dyspnoea degree ≤2 underwent cardiopulmonary exercise testing (CPET).Results28 LT recipients were included with a mean (sd) age of 48.7 (13.6) years. VO2 had a mean value of 21.49 (6.68) mL·kg−1·min−1 (75.24 (15.6) %) and the anaerobic threshold was reached at 48.6 (10.1) % of the VO2 max predicted. The mean (sd) HRR at peak exercise was 17.56 (13.6) %. The O2 pulse increased during exercise and was within normal values at 90.5 (19.4) %. The respiratory exchange ratio exceeded 1.19 at maximum exercise. The median (p25–75) EuroQol- 5D score was 1 (0.95–1), indicating a good quality of life. The median (p25–75) IPAQ score was 5497 (4007–9832) MET-min·week−1 with 89% of patients reporting more than 1500 MET-min·week−1. In the multivariate regression models, age, sex and DLCO remained significantly associated with VO2 max (mL·kg−1·min−1); Hb and FEV1 were significantly associated with WR max (watts), after adjusting for confounders.ConclusionWe report for the first time near-normal VO2 peak values during CPET and normal exercise capacity in long-term LT recipients without CLAD.

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