Qualitative study of patient perspectives on B-cell non-Hodgkin lymphoma: Impact of patient education.

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. e18109-e18109
Author(s):  
Anne Roc ◽  
Alexandra Howson ◽  
Wendy Turell ◽  
Matthew Alexander Lunning
Keyword(s):  
Quality Of Life ◽  
Qualitative Study ◽  
B Cell ◽  
Treatment Options ◽  
B Cell Lymphoma ◽  
Cell Transplant ◽  
Good Recall ◽  
Education Activity ◽  
The Impact

e18109 Background: This qualitative study explored the impact of an online, patient-focused education activity on B-cell NHL ( http://www.cancercoachlive.com/ ), developed by the Leukemia and Lymphoma Society, University of Nebraska, and PlatformQ Health, to improve patient knowledge on B-cell NHL and offer strategies to enhance quality of life through better disease and side effect management. Methods: 12 qualitative interviews were conducted using a semi-structured interview guide. Questions focused on knowledge of B-cell NHL epidemiology, prognosis, and typical presentation; diagnostic and imaging tests; efficacy and side effects of treatments used to treat B-cell NHLs; and actions to improve quality of life and overall health. Interviews were recorded and transcribed verbatim, and analyzed using constant comparative method with software support (NVivo 11, QSR International). Results: Participants, aged 43-78 (mean 60 years, 8 female), were diagnosed with a B-cell NHL 2-24 years prior to interview. Participants demonstrated understanding of B-cell NHL, with good recall on typical presentation of B-cell lymphoma, the importance of blood tests and laboratory/diagnostic procedures and what to expect during these tests. Six participants recalled traumatic experiences with bone marrow biopsy and suggest additional education for newly diagnosed patients. Participants were knowledgeable about treatment options covered by the program (i.e. active surveillance, chemotherapy, radiation therapy, stem cell transplant), and were interested in more information on treatment options across the B-cell disease trajectory. Not all participants could recall information on targeted therapies from the program, and there was low awareness about clinical trials as a treatment option, indicating need for further education. Conclusions: Overall, participants had a positive impression of the education activity. They judged the content to be comprehensive, accurate, and realistic. Participant descriptions suggest that education continues to play a role in allaying fears and anxieties even among patients who have learned to live with B-cell NHL and who have been managing their disease for several years.

scholarly journals Impact of Pediatric COVID-19 on Family Health-Related Quality of Life: A Qualitative Study from Latvia

2021 ◽  
Vol 8 ◽  
pp. 2333794X2110123
Author(s):  
Inese Stars ◽  
Liene Smane ◽  
Zanda Pucuka ◽  
Ieva Roge ◽  
Jana Pavare
Keyword(s):  
Quality Of Life ◽  
Qualitative Study ◽  
Family Relationships ◽  
Family Health ◽  
Support Network ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Information on family health-related quality of life (FHRQoL) among families of children with the coronavirus disease 2019 (COVID-19) is limited. This qualitative study explores the impact of pediatric COVID-19 on FHRQoL from the parents’ perspective. Semi-structured interviews were conducted with parents (n = 20) whose children had tested positive for the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). Inductive thematic analysis revealed the following 10 themes that represented parents’ perception of FHRQoL while taking care of a child with COVID-19: pediatric COVID-19 as a disease with many unknowns; emotional saturation; internal family relationships in the context of “a new experience”; routine household activities and daily regimen while family is in lockdown; plenty of free time; a wide social support network; social stigma associated with COVID-19; different options for work; savings and debts; challenges with family housing and transport availability. Our results show that parents experience multiple effects of pediatric COVID-19 with regard to FHRQoL.

scholarly journals Health-Related Quality of Life in Adrenocortical Carcinoma

Cancers ◽  
2019 ◽  
Vol 11 (10) ◽  
pp. 1500 ◽  
Author(s):  
Rebecca V. Steenaard ◽  
Laura A. Michon ◽  
Harm R. Haak
Keyword(s):  
Quality Of Life ◽  
General Population ◽  
Adrenocortical Carcinoma ◽  
Treatment Options ◽  
Clinical Aspects ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Insight into the health-related quality of life (HRQoL) impact of adrenocortical carcinoma (ACC) is important. The disease and its treatment options potentially have an impact on HRQoL. For patients with limited survival, HRQoL research is of utmost importance. We will therefore provide an overview of HRQoL studies in patients with ACC. We found six studies that measured HRQoL in 323 patients with ACC (3 cross-sectional, 1 cohort, 2 trials), all indicating a reduced HRQoL compared to the general population. The FIRMACT trial found that HRQoL of patients with ACC was reduced compared to the general population, and that chemotherapy-mitotane further reduced HRQoL even though survival improved. Clinical aspects of the disease, including cortisol and aldosterone production and adrenal insufficiency have shown great impact on HRQoL in benign disease, even after the recovery of hormonal status. However, the impact of malignant adrenal disease and treatment options on HRQoL including adrenalectomy, radiotherapy, mitotane therapy, and chemotherapy have not been sufficiently studied in patients with ACC. Although the number of HRQoL studies in patients with ACC is limited, the existing literature does indicate that ACC has a large impact on patients’ HRQoL, with disease specific aspects. Further HRQoL research in patients with ACC is essential to improve patient-centered care, preferably by using an ACC-specific HRQoL questionnaire.

Quality of Life Following Stroke: A Qualitative Study Across 30 Years

2021 ◽  
Vol 6 (1) ◽  
pp. 151-162
Author(s):  
Steffany M. Chleboun ◽  
Kathryn Brady ◽  
Jennie Zelenak
Keyword(s):  
Quality Of Life ◽  
Grounded Theory ◽  
Qualitative Study ◽  
Family Support ◽  
Resilience Theory ◽  
Grounded Theory Methodology ◽  
Long Period ◽  
The Impact

Much of what we know about stroke is limited to the first 5 years postinjury; however, the effects of having a stroke remain several years, even decades, postinjury, and the impact this has on an individual's quality of life over a long period of time is not completely understood. Purpose The purpose of this study was to understand one woman's experience living with the effects of stroke over multiple decades postinjury and to explore factors that affected her quality of life during this time. Method Using Grounded Theory methodology, data were drawn from 28 years of journals kept by the participant and from semistructured family interviews. Results Four major interacting themes emerged from the data: family support, faith, personality, and journaling. Findings are discussed in the context of resilience theory.

The Importance of the Patient-Physician Relationship in Myelodysplastic Syndromes.

Blood ◽  
2005 ◽  
Vol 106 (11) ◽  
pp. 1340-1340 ◽  
Author(s):  
Mary L. Thomas ◽  
Kathleen Heptinstall ◽  
Audrey Hassan
Keyword(s):  
Quality Of Life ◽  
Focus Groups ◽  
Myelodysplastic Syndromes ◽  
Treatment Options ◽  
The United States ◽  
Significant Finding ◽  
Physician Relationship ◽  
The Impact ◽  
The Relationship

Abstract Most physicians presume their relationship with the patient is a crucial component when managing chronic illness, such as myelodysplastic syndromes (MDS). This assumption was validated in a convenience sample of 70 adults with MDS who participated in five focus groups throughout the United States. The primary purpose of this qualitative study was to explore the impact of MDS on patients’ quality of life (QOL). The groups were facilitated by an advanced practice nurse with clinical expertise in MDS and qualitative research experience. Given the exploratory nature of the study design, discussions proceeded in differing directions; however, core questions were asked at each session (based on Ferrell’s work exploring QOL in patients with cancer (Oncology Nursing Forum, 1996). Sessions were audio-taped and professionally transcribed. Transcripts were coded and emerging themes identified using thematic analysis methods aided by the qualitative analysis program N5 (QSR International). The sample was 93% Caucasian, 51% male, with a mean age of 69 ± 9 years; 26% lived alone. Known MDS subtype was: 19 RA, 19 RARS, 11 RAEB, 3 5q-, 2 other (16 unknown); median time since diagnosis was 26 months (3 - 276). 73% received growth factors, 61% transfusions, 19% azacitidine, 16% thalidomide, 14% iron chelation; 29% all other; many patients received multiple (often concurrent) therapies. A significant finding from the focus groups revealed a detailed depiction of the patient-physician relationship from the patient’s perspective (discussed by 46 of the 62 patients who actively participated). Patients acknowledged many barriers that interfered with the relationship. These barriers were system related (e.g., extreme time constraints for physicians, priority to others who were more ill) or treatment related (e.g., lack of cure, limited treatment options). In addition, patients identified physician attributes that adversely impacted the relationship, including seeming indifference to the patient’s concerns, displays of arrogance, limited knowledge about MDS and its treatment, and especially, lack of confidence in managing the illness. In contrast, positive physician attributes that enhanced the relationship included: providing comprehensible explanations, willingness to seek assistance or opinions from MDS experts when the physician was unsure of the best treatment approach, and displays of compassion and concern. Patients identified displaying respect and interest in them as individuals as essential elements in establishing and maintaining a therapeutic relationship. Patients reacted to a difficult patient-physician relationship in various ways. Those patients who ascribed to the view that a physician had a revered position and was not to be challenged tended to suffer in silence, and remained anxious or depressed. Other patients described a more proactive position, where they continually sought new information about the disease and managing side effects and even felt responsible to explore other treatment options. However, this approach required much work and energy, and did not consistently alleviate the patient’s anxiety. MDS is a complex disease, where advances in understanding its pathology and identifying new treatments are beginning to have an impact in routine clinical practice. Data from this study suggest that physicians need to be aware of the barriers present in the patient-physician relationship and strive to ameliorate them. In so doing, patient’s anxiety, depression, and hyper-vigilance may be diminished, and quality of life enhanced.

Improvements in Health-Related Quality of Life of Patients with DLBCL after Treatment with Yttrium-90 Ibritumomab Tiuxetan (90y-Zevalin).

Blood ◽  
2005 ◽  
Vol 106 (11) ◽  
pp. 4794-4794
Author(s):  
S. S. Thompson ◽  
S. Macran ◽  
J. Kalmus ◽  
F. Morschhauser
Keyword(s):  
Quality Of Life ◽  
B Cell Lymphoma ◽  
Well Being ◽  
Maximal Response ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Anxiety Depression ◽  
The Impact

Abstract PURPOSE: This health-related quality of life (HRQL) study aimed to evaluate the impact of 90y-Zevalin therapy on the HRQL of older patients with relapsed diffuse large B-cell lymphoma (DLBCL) not eligible for stem cell transplantation. Ppsychometric performance of the FACT-G and EQ-5D in the same patient sample was also evaluated. The study was conducted alongside a single arm, phase II clinical trial of 90Y-Zevalin radioimmunotherapy. METHODS: The FACT-G scale contains 27 questions, grouped according to 4 “dimensions” of HRQL relevant to patients with cancer: Physical, Functional, Social and Emotional well-being. The scale provides a total score for overall HRQL and subscale scores for each dimension. The EQ-5D is a generic measure of HRQL used in a range of diseases and comprises a descriptive classification based on 5 broad dimensions and a visual analogue scale. Data from the 2 measures were analyzed with descriptive statistics. Validity was assessed in terms of correlations between individual dimensions. Changes in the dimensions and total scores of the FACT-G and EQ-5D from baseline to wk 12 post-90Y-Zevalin therapy were assessed using paired t-tests. Wk 12 corresponded to the time of expected maximal response to 90Y-Zevalin therapy. RESULTS: Sixty-six of 104 patients enrolled in the clinical study completed the FACT-G and EQ-5D questionnaires at baseline and 35 completed the questionnaires at wk 12. Those who completed the questionnaires at both baseline and wk 12 were more likely to have responded to 90Y-Zevalin (80% were responders) although they were comparable in terms of age (median = 72 yrs) and gender (54% male) to those who only completed the questionnaires at baseline. At baseline, the dimensions of HRQL with the worst scores and therefore most affected by DLBCL, included areas related to energy, pain, anxiety and depression, which would be expected given the symptoms commonly associated with DLBCL such as fatigue. The percentage of patients reporting “some or extreme problems” on each of the EQ-5D dimensions at baseline are summarized in the table. Moderate correlations were observed between the Physical Well-being of the FACT-G and the Usual Activities (=0.60) and Pain/Discomfort (=0.70) dimensions of the EQ-5D. The Emotional Well-being dimension of the FACT-G was moderately correlated with the Anxiety/Depression on the EQ-5D (=0.66). These data suggest the FACT-G and the EQ-5D were measuring some common concepts to patients. All summary dimensions of the FACT-G and EQ-5D showed either a positive trend or little change after treatment with 90Y-Zevalin, with the Physical Well-being dimension of the FACT-G reaching statistical significance (P=0.03) and measuring a 10% improvement over baseline. The change in total score of the FACT-G almost reached significance (P=0.06), as did the emotional dimension of the FACT-G (P=0.10) and the mobility dimension of the EQ-5D (P=0.08). CONCLUSION: Although number of participating patients was small, the EQ-5D and the FACT-G have demonstrated validity for patients with DLBCL following treatment with 90Y-Zevalin. The greatest impact of 90Y-Zevalin therapy is an improvement in physical well-being, with an increased level of energy, reduced amount of pain and reduced level of “feeling ill”. EQ-5D dimension % of patients reporting “Some or extreme problems” at baseline Mobility 26 Self-care 12 Usual activities 29 Pain/discomfort 54 Anxiety/depression 58

scholarly journals Investigating the impact of headaches on the quality of life of patients with glioblastoma multiforme: a qualitative study

BMJ Open ◽  
2016 ◽  
Vol 6 (11) ◽  
pp. e011616 ◽  
Author(s):  
Samuel Robert Bennett ◽  
Garth Cruickshank ◽  
Antje Lindenmeyer ◽  
Simon Rhys Morris
Keyword(s):  
Quality Of Life ◽  
Glioblastoma Multiforme ◽  
Qualitative Study ◽  
The Impact
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