scholarly journals Correlation of Lymphoma Patient Information Level with Healthcare Experience

Blood ◽  
2018 ◽  
Vol 132 (Supplement 1) ◽  
pp. 4782-4782
Author(s):  
Natalie Dren ◽  
Lorna Warwick ◽  
Karen Van Rassel ◽  
Theodoros Moysiadis ◽  
Christina Karamanidou ◽  
...  

Abstract Background: Across recent health reform research, there is growing advocacy and awareness surrounding the idea that patients should act as more effective managers of their health and healthcare. Knowledge dissemination is frequently named as a preliminary requirement for this shift in attitude and behaviors. In 2017, the Lymphoma Coalition (LC) conducted a mixed methods investigation to determine if evidence exists pointing to better outcomes for more 'informed' patients. Though outcome measurements and definitions varied throughout the literature, one theme remained consistent: when a patient has knowledge surrounding their condition, they are more inclined to be confident in sustaining an active patient role, they ask more questions and their patient experience is improved. To continue this investigation, the LC utilized the 2018 Global Patient Survey (GPS) on Lymphomas and CLL to further explore patient awareness and understanding, sources and level of information, support from healthcare professionals (HCPs), and the impact this has on the patient experience. Methods: The 2018 LC GPS was hosted on a third-party portal from January 2018 to March 2018. Patient and caregiver versions were prepared and made available in 19 languages. The survey questions focused on the following: patient information and support, fear of relapse, fatigue, living with side effects, and barriers to care. The survey was advertised through the social media of 65+ lymphoma-related patient organisations, Lymphoma Hub, scientific partners, INTERLYMPH, and HCPs. Overall, 6631 participants took part from all over the world. To perform the analysis, the surveys completed by patients and those completed by caregivers were merged. A minimum completion threshold (0.30) was defined in order to eliminate partially completed surveys. Descriptive statistics were performed for all questions of the survey. Associations between factors were examined through cross-tabulations and chi-square tests (significance level set at p=0.05). All statistical analyses were performed with IBM SPSS v21. The results presented are those specific to the 'patient information and support' sub-investigation. Results: When asked what level of information they felt they had overall, 34% of respondents globally felt they had received adequate information, 45% somewhat adequate and 21% inadequate information. The impact of perceived information level was reflected in respondent's understanding of the medical aspects of their lymphoma, diagnosis and care. Respondents with adequate information reported a greater understanding of all topics surrounding diagnosis and care (subtype, treatments, side effect management) following their initial visit to the doctor (Table 1, Figures 1 & 2). Adequately informed respondents were more confident in determining the need for medical care vs. handling a health problem on their own (59%) compared to somewhat (35%) and inadequately (22%) informed respondents. Similar trends were observed across the majority of feeling and understanding categories (Figure 3). Generally, adequately informed respondents reported experiencing low levels of negative feelings (out of control, fearful) 'most days', while inadequately informed respondents reported experiencing low levels of positive feelings (in control, mentally/physically strong) 'most days'. To analyze doctor-patient communication, somewhat and inadequate information levels were grouped as a comparator against adequate information; across all categories, improved communication was reported by those with adequate information (Figure 4). Additionally, the general reporting of physical, medical, and psycho-social side effects was statistically dependent on the information level variable. Conclusion: Having a perceived adequate information level was correlated with more self-reported positive healthcare experiences. Patients with adequate information reported bettered management of their health and healthcare through improved understanding, confidence levels, and communication. Therefore, access to credible timely information is an important aspect to a successful patient experience. These results present implications for both patient outcomes (health behaviors, health status) and burdens to the healthcare system. Disclosures No relevant conflicts of interest to declare.

2020 ◽  
Vol 18 (2) ◽  
pp. 40-45 ◽  
Author(s):  
Helen Ludlow ◽  
John Green

Radiotherapy used to treat cancers in the pelvic region can have lasting side effects, and the persistence of these symptoms for 3 months or more is described as pelvic radiation disease (PRD). The growing number of pelvic cancer patients being diagnosed and successfully treated is increasing the incidence of PRD. This review examines the literature on the gastrointestinal symptoms of PRD. This includes how PRD is defined, how it is identified and how it relates specifically to the three pelvic cancers in which it most commonly manifests (prostate, gynaecological and colorectal). It pays particular attention to the impact of PRD on patient experience and quality of life. This review is the first part in a series on the GI symptoms of PRD.


Blood ◽  
2010 ◽  
Vol 116 (21) ◽  
pp. 1-1
Author(s):  
Anna Jankowska ◽  
Myunggon Ko ◽  
Yun Huang (equal contribution) ◽  
Utz J. Pape ◽  
Hadrian Szpurka ◽  
...  

Abstract Abstract 1 TET2 mutations are frequently found across broad spectrum of myeloid malignancies but how these mutations contribute to diseases is still unknown. Preliminary results from our laboratory have suggested that TET2 converts 5-methylcytosine (5-mC) to 5-hydroxymethylcytosine (5-hmC) and consequently, the levels of 5-hmC may be lower in genomes of mutant bone marrow cells. To facilitate study of TET2 function we developed a blot assay to detect 5-hmC in genomic DNA with a specific antiserum to 5-hmC. In a second improved assay with increased sensitivity and precision, we treated genomic DNA with bisulfite in order to convert 5-hmC to cytosine 5-methylenesulfonate (CMS) and measured 5-hmC levels indirectly using a specific anti-CMS serum. Based on the results of this technique we demonstrate here for the first time that indeed TET2 mutations in predicted catalytic residues and other positions compromised TET2 function. We studied 102 patients with various myeloid malignancies (4/28 MDS, 14%, 26/48 MDS/MPN, 54% and 1/4 MPN, 2% and primary 2/11 AML 18% and 3/11 sAML, 27% TET2 mutants, respectively) and compared to wt cases or controls (N=17). Mutations were found throughout the entire coding region and were mostly inactivating (33/45 TET2 mutations). The levels of 5-hmC in genomic DNA from TET2 mutants were significantly decreased in comparison to wt cases and controls (p=4.5e-08 and p=1.8e-09, respectively). Particularly low levels of 5-hmC were found in patients with homozygous (UPD)/hemizygous (deletion) TET2 mutations and those with biallelic mutations. Surprisingly, 18% of all TET2 WT patients also showed low levels of genomic 5-hmC (despite normal TET2 mRNA expression), suggesting that these patients may carry not yet identified variants/lesions in TET2 or other partner proteins involved in TET2-mediated catalysis. To further investigate the impact of TET2 mutations associated with myeloid malignancies we also introduced 9 different missense mutations corresponding to those found in patients into murine Tet2 cells; severe loss of enzymatic activity was observed in 7/9 cases as measured by greatly diminished 5-hmC levels. To study the role of Tet2 in normal hematopoiesis we depleted Tet2 in C57BL/6 mice by retrovirus-mediated transduction of shRNA against Tet2. Tet2 depletion is associated with skewing of hematopoietic differentiation towards the monocyte/macrophage lineage. To further investigate the function of TET2 we transduced the myeloid THP-1 cell line with lentiviral vector containing TET2 cDNA (TET2+) or an empty vector. This manipulation allowed us to select clones showing 19-fold increase in TET2 mRNA expression without significantly alterations of proliferation kinetics. Using this model we studied the impact of TET2 overexpression on resultant methylation pattern of CpG sites. We have applied Illumina Infinium HumanMethylation27 arrays (27,5K CpG sites/14.4K genes). Overexpression of TET2 resulted in a distinct promoter methylation patterns with 169 altered CpG sites with difference of averaged β>0.5 (considered significant as compared to control). Among these differentially methylated loci, 27 promoters were significantly hypomethylated while 42 were hypermethylated as compared to control cells. Change in methylation pattern observed through overexpression of TET2 in vitro prompted us to analyze methylation patterns in patients with and without TET2 mutations or those with decreased 5-hmC levels. Using methylation arrays a total of 62 cases were analyzed. When patients were grouped based on the levels of 5hmC, an associated methylation signature can be clearly discerned with 2512 differentially methylated loci and distinct skewing towards hypomethylation (2510 sites; e.g., TMEM102, ABCC11) vs. hypermethylation (2 sites, AIM2 and SP140), consistent with the observation made in the TET2+ cells line. In sum, our results provide strong evidence for TET2 as the first mutated gene in myeloid malignancies that is involved in conversion of 5-mC to 5-hmC in DNA, indicating the novel role of TET2 in a substantial component of epigenetic deregulation in myeloid malignancies. Disclosures: No relevant conflicts of interest to declare.


Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. SCI-33-SCI-33
Author(s):  
Saghi Ghaffari

Abstract Hematopoietic stem cells (HSCs) like most, if not all, adult stem cells are primarily quiescent but have the potential to become highly active on demand. HSC quiescence is maintained by glycolytic metabolism and low levels of reactive oxygen species (ROS), which indicate that mitochondria are relatively inactive in quiescent HSC. However, HSC cycling - and exit of quiescence state - require a swift metabolic switch from glycolysis to mitochondrial oxidative phosphorylation. To improve our understanding of mechanisms that integrate energy metabolism with HSC homeostasis, my laboratory has been focused on the transcription factor FOXO3, which is critical for the maintenance of HSC quiescence and redox state and is implicated in HSC aging. We showed recently that FOXO3 is key to HSC mitochondrial metabolism, independent of its inhibition of ROS or mTOR signaling. Mitochondria divide and fuse constantly in part to segregate and dispose of their damaged counterparts. These processes are influenced by and highly linked to mitochondrial metabolism. We have recently developed imaging approaches to study HSC mitochondrial divisions. Mechanisms by which FOXO3 regulates HSC mitochondria and the impact of impaired FOXO3 on the HSC health and activity, and mitochondrial network will be discussed. Detailed understanding of the mitochondrial metabolism and divisions in HSC and their relationship to nuclear transcription are likely to have broad implications for the state of HSC fitness, regenerative capacity and aging. Disclosures No relevant conflicts of interest to declare.


2017 ◽  
Vol 2017 ◽  
pp. 1-8 ◽  
Author(s):  
Ciara Ní Dhubhlaing ◽  
Ailish Young ◽  
Laura J. Sahm

Clozapine is the only antipsychotic with evidence for efficacy in treatment of resistant schizophrenia but it carries a high side effect burden. Patient information is provided but may be poorly retained. This study aims to examine the impact of pharmacist counselling upon patient knowledge of clozapine. Outpatients, aged 18 years and over, attending St. Patrick’s University Hospital, Dublin, participated in this study between June and August 2015. The intervention consisted of pharmacist counselling on two occasions one month apart. Knowledge was assessed using a 28-point checklist devised from the currently available clozapine patient information sources, at baseline and after each counselling session. Ethics approval was obtained. Twenty-five participants (40% female; mean age 45.1 years, SD 9.82; 64% unemployed, 28% smokers) showed an improvement in knowledge scores of clozapine from baseline to postcounselling on each occasion with an overall improvement in knowledge score, from baseline to postcounselling at one month, of 39.43%; p<0.001. This study adds to the evidence that interventions involving pharmacist counselling can improve patient knowledge, whilst the specific knowledge gained relating to recognition of side effects may help patients towards more empowerment regarding their treatment.


Dental Update ◽  
2021 ◽  
Vol 48 (9) ◽  
pp. 752-758
Author(s):  
Harjit Tagar ◽  
Omesh Modgill ◽  
Jashme Patel ◽  
Julie Edwards ◽  
Olamide Obisesan

This article describes the use of a newly developed animation for the delivery of patient information pertinent to dental treatment performed under intravenous conscious sedation, and provides an understanding of how digital health-related information impacts upon the patient experience. This article provides insight into the rationale for using animation as a means to deliver healthcare-related information, the process undertaken to develop this animation and how the themes and imagery in the animation can be used more broadly to further enhance the patient experience in primary and secondary dental care settings. CPD/Clinical Relevance: This article outlines the process of developing an animation for patient information and the impact animation can have upon patient experience locally as an aid to delivering instructions.


2001 ◽  
Vol 25 (1) ◽  
pp. 21-24 ◽  
Author(s):  
Sian Llewellyn-Jones ◽  
Gill Jones ◽  
Peter Donnelly

Aims and MethodTo identify the questions patients most commonly ask their psychiatrist. For 200 consecutive psychiatric patient consultations, answers to the invitation, “Do you have any questions you wish to ask me?” were recorded along with diagnosis. The most frequently asked questions were noted and compared across patient groups.ResultsMost patients wanted to know when medication could be reduced or stopped. Some patients asked for more medication. Concerns about side-effects and fitness to drive were also common. A high proportion of patients (21–57%) asked no questions.Clinical ImplicationsPsychiatrists must be prepared to answer questions effectively on the necessity and benefits of long term medication. These may be useful facts to include in a patient information leaflet. Side-effects of medication should also be taken seriously. Many patients lead impoverished social lives, with low levels of interpersonal interaction. This may be a barrier to participation in the clinical interview, and diminish the likelihood of posing questions.


Blood ◽  
2009 ◽  
Vol 114 (22) ◽  
pp. 4900-4900
Author(s):  
Anita Waldmann ◽  
Begoña Barragán ◽  
Viorica Cursaru ◽  
Candy Heberlein ◽  
Miroslav Hrianka ◽  
...  

Abstract Abstract 4900 Recent advances in the treatment of multiple myeloma have increased response rates and treatment outcomes and raised hopes that myeloma may soon be turned into a chronic disease. However, myeloma treatment is often associated with various side effects that can sometimes have a significant impact on the quality of life of myeloma patients and also affect the overall treatment plan. An international comparative survey of myeloma patients and patient relatives and healthcare professionals is conducted to assess perceptions of how myeloma patients are informed about potential side effects of myeloma treatment options, the impact of treatment side effects on a myeloma patient's overall well-being and on the course of myeloma treatment, the satisfaction concerning the management of treatment side effects, potential side effects that myeloma patients don't feel comfortable reporting to their doctor as well as potential reasons for not reporting them, and the satisfaction concerning access to information and support, access to novel treatments, coverage of treatment costs, overall quality of treatment and care, and psycho-social and emotional support. The comparative survey is conducted based on 2 comparable two-page questionnaires, 1 for healthcare professionals and 1 for myeloma patients and patient relatives. The survey consists of 9 multiple-choice and ranking format questions. The questionnaires were developed by ME. They were pre-tested with both professional and patient communities and are available in 6 languages: DE, EN, ES, FR, IT, PL. The survey is distributed by mail or e-mail, it can be taken online via accessing the organisation's web site, and it is conducted on paper at haematological and oncological congresses and patient information days. To date, a total of 272 healthcare professionals from 44 countries and 257 myeloma patients and patient relatives from 21 countries have responded to the survey. Data gathering will continue until mid OCT 2009 and final survey results will be presented at ASH 2009. The survey was made possible through an unrestricted grant from Ortho Biotech, Biopharmaceutical Division of Janssen-Cilag. Disclosures No relevant conflicts of interest to declare.


1998 ◽  
Vol 28 (2) ◽  
pp. 329-356 ◽  
Author(s):  
David R. Buchanan ◽  
Lawrence Wallack

The paper examines the impact and possible unintended side effects of the privately sponsored Partnership for a Drug-Free America (PDFA) media campaign to reduce illicit drug abuse. The paper describes the history, goals, organization, production processes, and process and outcome evaluations of the PDFA advertising campaign. It also reviews major criticisms that have been leveled at the PDFA campaign, including its dissemination of false information, the narrow scope of its message, a number of unintended iatrogenic side-effects, potential conflicts of interest arising from the sources of its funding, and the agenda-setting function of the PDFA campaign in defining which drugs are dangerous and how the attendant problems should be addressed.


2017 ◽  
Vol 76 (3) ◽  
pp. 107-116 ◽  
Author(s):  
Klea Faniko ◽  
Till Burckhardt ◽  
Oriane Sarrasin ◽  
Fabio Lorenzi-Cioldi ◽  
Siri Øyslebø Sørensen ◽  
...  

Abstract. Two studies carried out among Albanian public-sector employees examined the impact of different types of affirmative action policies (AAPs) on (counter)stereotypical perceptions of women in decision-making positions. Study 1 (N = 178) revealed that participants – especially women – perceived women in decision-making positions as more masculine (i.e., agentic) than feminine (i.e., communal). Study 2 (N = 239) showed that different types of AA had different effects on the attribution of gender stereotypes to AAP beneficiaries: Women benefiting from a quota policy were perceived as being more communal than agentic, while those benefiting from weak preferential treatment were perceived as being more agentic than communal. Furthermore, we examined how the belief that AAPs threaten men’s access to decision-making positions influenced the attribution of these traits to AAP beneficiaries. The results showed that men who reported high levels of perceived threat, as compared to men who reported low levels of perceived threat, attributed more communal than agentic traits to the beneficiaries of quotas. These findings suggest that AAPs may have created a backlash against its beneficiaries by emphasizing gender-stereotypical or counterstereotypical traits. Thus, the framing of AAPs, for instance, as a matter of enhancing organizational performance, in the process of policy making and implementation, may be a crucial tool to countering potential backlash.


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