When patients decide to stop chemotherapy and choose symptom-focused care: Patients’ perspective and concerns.

2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 28-28
Author(s):  
Ilona Fridman ◽  
Tanya Nikolova ◽  
Paul A. Glare ◽  
E. Tory Higgins
Keyword(s):  
Quality Of Life ◽  
Preliminary Analysis ◽  
Institutional Review Board ◽  
Cancer Center ◽  
Decision Making Process ◽  
Structured Interviews ◽  
Communication Techniques ◽  
Institutional Review ◽  
Patients Perspective

28 Background: Patients often continue chemotherapy at the end of life, decreasing their quality of life without prolonging survival. Because humans tend to make emotional choices rather than rational ones when considering unpleasant options, patients are likely to reject hospice and other forms of symptom-focused care (SFC) when it could be beneficial for them. We explored patients’ perspectives on how they choose between continuing cancer treatment and SFC. Methods: Semi-structured interviews with 20 patients recruited from palliative care clinics at Memorial Sloan Kettering Cancer Center (MSKCC). Interviews covered patients’ decision-making process regarding further chemotherapy vs. SFC. Interviewees gave verbal consent, the MSKCC Institutional Review Board granting a waiver. Results: Two key conditions were identified as necessary for patients to choose SFC. First, the patient accepts that further chemotherapy is not going to be beneficial to them. Second, the oncologist endorses the transition to SFC. Preliminary analysis of treatment choices at the time of interview (see Table) also found many of those who expected they would benefit from further treatment experienced negative emotions when SFC was recommended. Conclusions: These data confirm the importance of raising prognostic awareness, and endorsing hospice. Further research should focus on developing communication techniques to recommend SFC in a way that helps patients who continue to want more treatment to calmly understand and consider carefully the advice being offered, rather than simply disliking it and quickly rejecting it. [Table: see text]

scholarly journals Protocol for a validation study of the translated stapesplasty outcome test 25 for measurement of disease-specific quality of life in Dutch patients with otosclerosis

BMJ Open ◽  
2019 ◽  
Vol 9 (12) ◽  
pp. e030219
Author(s):  
Esther E Blijleven ◽  
Hans G X M Thomeer ◽  
Robert Stokroos ◽  
Inge Wegner
Keyword(s):  
Quality Of Life ◽  
Stapes Surgery ◽  
Institutional Review Board ◽  
Healthy Controls ◽  
Health Related Quality ◽  
Institutional Review ◽  
Related Quality ◽  
Health Related ◽  
Disease Specific

IntroductionOtosclerosis is a common cause of acquired conductive hearing loss and can be treated using hearing aids or surgically. Surgical success rates or surgical results are usually reported using pure-tone audiometric thresholds and/or speech discrimination scores. Audiometric results and patient-reported quality of life after stapes surgery do not seem to correlate well. It is therefore our opinion that health-related quality of life measurements should be implemented as an additional outcome measure after stapes surgery. So far, there is a lack of a valid, reliable and clinically feasible measuring tool for determining health-related quality of life in Dutch patients with otosclerosis who undergo stapes surgery.Methods and analysisA prospective validation study was designed to translate and validate the disease-specific Stapesplasty Outcome Test 25 (SPOT-25) in a population of Dutch patients with otosclerosis who undergo primary stapes surgery. A total of 125 patients with otosclerosis who will be undergoing primary stapes surgery and 50 healthy controls will be included. The patients with otosclerosis will fulfil several questionnaires preoperatively, 6 to 8 weeks postoperatively and 8 to 10 weeks postoperatively with a 2-week interval between the postoperative administrations. The patients’ audiometric results, which are measured routinely before and after undergoing primary stapes surgery, will also be used. The healthy controls will fulfil the translated SPOT-25 once. First, the original SPOT-25 will be translated from German to Dutch in a six-step process. Second, the translated SPOT-25 will be pilot-tested in a subset of patients. Lastly, validity, reliability and responsiveness of the translated SPOT-25 will be analysed.Ethics and disseminationThe research protocol was approved by the Institutional Review Board of the University Medical Center Utrecht (protocol 18–768/C; V.1, November 2018). Initially, we planned to include 50 patients. At a later stage we decided to increase the sample size to 100 patients. We notified the Institutional Review Board of this change to the protocol. The trial results will be disseminated through peer-reviewed medical journals and presented at scientific conferences.Trial registration numberNL7586.

On the road again: Patient perspectives on commuting for palliative care

2010 ◽  
Vol 8 (2) ◽  
pp. 187-195 ◽  
Author(s):  
Barbara Pesut ◽  
Carole A. Robinson ◽  
Joan L. Bottorff ◽  
Gillian Fyles ◽  
Sandra Broughton
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Palliative Care ◽  
Health Care Providers ◽  
Well Being ◽  
Cancer Center ◽  
Care Providers ◽  
Structured Interviews ◽  
On The Road

AbstractObjective:The aim of this research project was to gain an understanding of the experiences of rural cancer patients who commute to an urban cancer center for palliative care.Method:The study utilized a mixed method design. Fifteen individuals with a palliative designation participated in semi-structured interviews and filled out the Problems and Needs in Palliative Care Questionnaire.Results:Qualitative findings included three major themes: cultures of rural life and care, strategies for commuting, and the effects of commuting. Participants valued their rural lifestyles and gained significant support from their communities. Strategies included preparing for the trip with particular attention to pain management, making the most of time, and maintaining significant relationships. Establishing a routine helped to offset the anxiety of commuting. Commuting was costly but the quality of life and supportive relationships obtained through treatment were significant benefits. Questionnaire data suggested that participants were experiencing a number of problems but few indicated they desired more professional attention to those problems.Significance of Results:Rural lifestyles are often an important part of overall well-being and commuting for care is both costly and complex. Health care providers should assist individuals to weigh the relative contributions of staying in their rural locale versus commuting for care to their overall quality of life. Palliative-care individuals in this study indicated a number of ongoing problems but were not inclined to seek further assistance from health care providers in addressing those problems. Clinicians should actively inquire about problems and further research is needed to understand why patients are reluctant to seek help.

scholarly journals 4580 Development of a play-based coaching intervention to improve quality of life and wellbeing for mothers with cancer and their young children

2020 ◽  
Vol 4 (s1) ◽  
pp. 27-27
Author(s):  
Rosa Roman-Oyola ◽  
Anita Bundy ◽  
Eida Castro ◽  
Osiris Castrillo
Keyword(s):  
Quality Of Life ◽  
Young Children ◽  
Depression Symptoms ◽  
Improve Quality ◽  
Structured Interviews ◽  
Yield Data ◽  
Implementation Phase ◽  
Coaching Intervention ◽  
Phase 1B

OBJECTIVES/GOALS: Mothers with cancer who have young children experience life disruptions when treatment procedures limit mother-child interactions. This study proposes the development of an intervention combining the Coaching approach with the Model of Playfulness to improve Quality of Life (QoL) and wellbeing of these patients and their young children. METHODS/STUDY POPULATION: This embedded mixed method study will be guided by the two initial phases of the ORBIT Model for the development of behavioral interventions for patients with chronic diseases. Participants will be mothers in the post-acute treatment stage of cancer (n = 6) and their children who are between 2 years and a half and 6 years, 11 months. Phase 1A, Definition, builds on qualitative data from a concurrent study exploring the experiences of mothers with cancer playing with their young children. As part of this phase, we will develop a play-based coaching intervention. In Phase 1B, Refinement, we will employ in-depth semi-structured interviews and standardized tools to evaluate acceptability of the intervention and preliminary outcomes. This will serve to further refine the intervention. RESULTS/ANTICIPATED RESULTS: Phase 1A will yield a plan for the intervention and data to enhance its initial implementation. Phase 1B will yield data, from the perspective of the mothers, about acceptability of the intervention procedures (e.g., delivery strategy, place for the intervention, time devoted, and outcome measures). This will enable modifications to the intervention. Additionally, Phase IB will yield preliminary data from specific QoL and wellbeing measures. For the mother, data about anxiety and depression symptoms, stress levels, and parental self-efficacy; for the child, emotional and behavioral indicators; for both: playfulness. DISCUSSION/SIGNIFICANCE OF IMPACT: This study entails the development of an intervention to enhance QoL and wellbeing of mothers with cancer and their children. Play moments as the centerpiece of the intervention, represent an innovative approach. Findings will guide the design of future feasibility studies to advance the development of this outcome driven intervention.

Assessing the impact of chemotherapy-induced nausea and vomiting on patients’ quality of life: An Arabic version of the Functional Living Index-Emesis

2021 ◽  
pp. 107815522199844
Author(s):  
Abdullah M Alhammad ◽  
Nora Alkhudair ◽  
Rawan Alzaidi ◽  
Latifa S Almosabhi ◽  
Mohammad H Aljawadi
Keyword(s):  
Quality Of Life ◽  
Cancer Patients ◽  
Arabic Language ◽  
Nausea And Vomiting ◽  
Cancer Center ◽  
Arabic Version ◽  
Patient Reported ◽  
Arabic Speaking ◽  
The Impact

Introduction Chemotherapy-induced nausea and vomiting is a serious complication of cancer treatment that compromises patients’ quality of life and treatment adherence, which necessitates regular assessment. Therefore, there is a need to assess patient-reported nausea and vomiting using a validated scale among Arabic speaking cancer patient population. The objective of this study was to translate and validate the Functional Living Index-Emesis (FLIE) instrument in Arabic, a patient-reported outcome measure designed to assess the influence of chemotherapy-induced nausea and vomiting on patients’ quality of life. Methods Linguistic validation of an Arabic-language version was performed. The instrument was administered to cancer patients undergoing chemotherapy in a tertiary hospital's cancer center in Saudi Arabia. Results One-hundred cancer patients who received chemotherapy were enrolled. The participants’ mean age was 53.3 ± 14.9 years, and 50% were female. Half of the participants had a history of nausea and vomiting with previous chemotherapy. The Cronbach coefficient alpha for the FLIE was 0.9606 and 0.9736 for nausea and vomiting domains, respectively, which indicated an excellent reliability for the Arabic FLIE. The mean FLIE score was 110.9 ± 23.5, indicating no or minimal impact on daily life (NIDL). Conclusions The Arabic FLIE is a valid and reliable tool among the Arabic-speaking cancer population. Thus, the Arabic version of the FLIE will be a useful tool to assess the quality of life among Arabic speaking patients receiving chemotherapy. Additionally, the translated instrument will be a useful tool for future research studies to explore new antiemetic treatments among cancer patients.

scholarly journals The patients’ perspective on coordinated action for cancer and AMR

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
K Apostolidis
Keyword(s):  
Quality Of Life ◽  
Immune System ◽  
Cancer Patients ◽  
Cancer Treatments ◽  
Unique Challenge ◽  
Coordinated Action ◽  
The Impact ◽  
Patients Perspective

Abstract The speaker will present the perspective of the cancer patients, and the challenges they encounter across the spectrum of care and what measures they consider relevant in terms of prevention, diagnosis, treatment and, indeed, to raise awareness of the impact of AMR on rendering cancer treatments ineffective. She will elaborate on survivorship, and on the impact of AMR on the quality of life of patients, their carers, and families. Emphasis will be given on the implications of modern therapies, such as immunotherapy, representing a unique challenge in terms of better understanding the effect on overall health of patients, with the effect they have the immune system, further weakening the patient and leaving him/her exposed to infections potentially of higher risk than cancer itself.

scholarly journals QOLP-04. PILOT STUDY OF A VIDEOCONFERENCE-BASED PSYCHOLOGICAL INTERVENTION FOR FAMILY CAREGIVERS OF PATIENTS WITH MALIGNANT GLIOMAS

2020 ◽  
Vol 22 (Supplement_2) ◽  
pp. ii175-ii175
Author(s):  
Deborah Forst ◽  
Michelle Mesa ◽  
Emilia Kaslow-Zieve ◽  
Areej El-Jawahri ◽  
Joseph Greer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Self Efficacy ◽  
Coping Skills ◽  
Malignant Gliomas ◽  
Anxiety Symptoms ◽  
Structured Interviews ◽  
Post Intervention ◽  
Clinically Significant ◽  
And Coping

Abstract BACKGROUND Caregivers of patients with malignant gliomas experience substantial anxiety symptoms while caring for someone with progressive neurological decline. Yet, interventions to reduce psychological distress and improve quality of life (QoL) in this caregiver population are lacking. METHODS We conducted an open pilot study evaluating feasibility and acceptability of a cognitive behavioral therapy-based intervention for caregivers of patients with malignant gliomas with clinically significant anxiety (Generalized Anxiety Disorder [GAD-7] score ≥ 5). Caregivers participated in six videoconference sessions with a mental health provider. We defined the intervention as feasible if ≥ 70% of eligible caregivers enrolled and ≥ 70% of those enrolled completed ≥ 50% of sessions. We evaluated intervention acceptability in semi-structured interviews. Caregivers completed baseline and post-intervention surveys assessing anxiety and depression symptoms (Hospital Anxiety and Depression Scale), QoL (Caregiver Oncology Quality of Life Questionnaire), caregiving burden (Caregiver Reaction Assessment), self-efficacy (Lewis Cancer Self-Efficacy Scale), and perceived coping skills (Measure of Current Status-Part A). We explored post-intervention changes using paired t-tests. RESULTS We obtained consent from 70.0% (21/30) of caregivers approached, of which 66.7% (14/21) had clinically significant anxiety and thus were eligible to participate (mean age=55.7 years, 64.3% female). Among enrolled caregivers, 71.4% (10/14) completed ≥ 50% of sessions. In semi-structured interviews, all participants found the intervention helpful and valued the ability to participate remotely via videoconference. Among caregivers who completed at least one session, 80.0% (8/10) completed all assessments and were included in analyses. Post-intervention, caregivers reported reduced anxiety symptoms (P=.02) and improved QoL (P=.03) and coping skills (P=.001). We found no significant change in depression, caregiving burden, or self-efficacy. CONCLUSION Our videoconference-based intervention is feasible and acceptable to caregivers. Participants reported significant improvements in anxiety symptoms, quality of life, and coping skills post-intervention, supporting further investigation of the intervention in a randomized controlled trial.

scholarly journals Acceptability and Feasibility of a Mindfulness Intervention Delivered via Videoconferencing for People With Parkinson’s

2021 ◽  
pp. 089198872098890
Author(s):  
Angeliki Bogosian ◽  
Catherine S. Hurt ◽  
John V. Hindle ◽  
Lance M. McCracken ◽  
Debora A. Vasconcelos e Sa ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cost Effectiveness ◽  
Qualitative Interviews ◽  
Quality Adjusted Life Year ◽  
Secondary Outcome ◽  
Structured Interviews ◽  
Potential Cost ◽  
Mindfulness Intervention ◽  
Related Quality

Mindfulness-based group therapy is a rapidly growing psychological approach that can potentially help people adjust to chronic illness and manage unpleasant symptoms. Emerging evidence suggests that mindfulness-based interventions may benefit people with Parkinson’s. The objective of the paper is to examine the appropriateness, feasibility, and potential cost-effectiveness of an online mindfulness intervention, designed to reduce anxiety and depression for people with Parkinson’s. We conducted a feasibility randomized control trial and qualitative interviews. Anxiety, depression, pain, insomnia, fatigue, impact on daily activities and health-related quality of life were measured at baseline, 4, 8, and 20 weeks. Semi-structured interviews were conducted at the end of the intervention. Participants were randomized to the Skype delivered mindfulness group (n = 30) or wait-list (n = 30). Participants in the mindfulness group were also given a mindfulness manual and a CD with mindfulness meditations. The intervention did not show any significant effects in the primary or secondary outcome measures. However, there was a significant increase in the quality of life measure. The incremental cost-effectiveness ratio was estimated to be £27,107 per Quality-Adjusted Life Year gained. Also, the qualitative study showed that mindfulness is a suitable and acceptable intervention. It appears feasible to run a trial delivering mindfulness through Skype, and people with Parkinson’s found the sessions acceptable and helpful.

scholarly journals Anxiety in autistic individuals who speak few or no words: A qualitative study of parental experience and anxiety management

Autism ◽  
2020 ◽  
pp. 136236132096236
Author(s):  
Joanne Tarver ◽  
Effie Pearson ◽  
Georgina Edwards ◽  
Aryana Shirazi ◽  
Liana Potter ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Language Use ◽  
Management Strategies ◽  
Assessment Tools ◽  
Evidence Based ◽  
Structured Interviews ◽  
Verbal Language ◽  
Parental Recognition

Anxiety is a common co-occurring condition in autism and impacts quality of life of autistic individuals and their families; autistic individuals who speak few or no words represent an under-researched group. This qualitative study aimed to understand more about parental recognition and management of anxiety in autistic individuals who speak few or no words. Semi-structured interviews were conducted with parents/carers of 17 autistic individuals (mage = 14.29) recruited from an existing participant database and social media adverts. Using thematic analysis, 15 themes were placed under three a-priori grand themes: parental recognition of anxiety; parental management of anxiety; and anxiety impact on the autistic individual and their family. Due to reduced verbal language use and overlap with other behaviours, parents described difficulties recognising anxiety in their child. However, they also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. The findings of this study can help to inform the development of targeted intervention and assessment measures for anxiety in autistic individuals who speak few or no words. Lay abstract Anxiety is a common condition in autistic individuals, including those who also have an intellectual disability. Despite this, autistic individuals who have severe to profound intellectual disability, or use few or no words, are often excluded from autism research. There are also very few assessment tools and interventions with known effectiveness for autistic individuals with intellectual disability. In this study, we aimed to learn more about parent/carers experiences of recognising and managing anxiety in autistic individuals who use few or no words. We conducted semi-structured interviews with parents and carers to address three research questions: (1) what techniques and management strategies do parents describe for anxiety-related behaviour in their child; (2) how do communication difficulties impact parental understanding and management of anxiety provoking situations and behaviours; (3) what is the impact of anxiety-related behaviours on the quality of life of autistic individuals and their families? During the interviews, parents described difficulties recognising anxiety in their child, mostly due to reduced verbal language use and anxiety behaviours overlapping with other behaviours (e.g. autism characteristics). However, parents also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. We will use the findings of this study to inform future research to develop assessment tools and interventions for anxiety in autistic individuals who use few or no words.

scholarly journals Fears, beliefs, and quality of life of patients with cancer vs the general population during the coronavirus disease 2019 (COVID-19) pandemic in Lombardy

2021 ◽  
pp. 030089162110228
Author(s):  
Carla Ida Ripamonti ◽  
Giacomo Massa ◽  
Daniela Insolvibile ◽  
Mauro Guglielmo ◽  
Guido Miccinesi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
General Population ◽  
Perceived Risk ◽  
Well Being ◽  
Comprehensive Cancer Center ◽  
Cancer Center ◽  
Psychological Consequences ◽  
Patients With Cancer ◽  
Fear Of Cancer

Aim: To understand how patients with cancer reacted to the coronavirus disease 2019 (COVID-19) pandemic and whether their quality of life (QoL) was affected. Methods: In June 2020, 111 patients with cancer treated in the supportive care unit of a Comprehensive Cancer Center in Milan and 201 healthy controls from the general population were enrolled and assessed both quantitatively and qualitatively for fears and COVID-19–related beliefs as well as for QoL. Results: Fear of COVID-19 was significantly lower among patients (41% vs 57.6%; p = 0.007), as was fear of cancer (61.5% vs 85.6%; p < 0.001) and other diseases. The perceived risk of getting COVID-19 was lower among patients (25.2% vs 52.7%; p < 0.001), as was the belief of having been exposed to severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) (18.1% vs 40.8%; p < 0.001). The physical component of QoL was better among the population (54.5 vs 43.8; p < 0.001); the reverse was true for patients’ psychological well-being (44.6 vs 39.6; p < 0.001). The qualitative data supported such results, showing a reduced psychological effect on the patients with cancer compared to the controls. Various reasons explain this result, including the awareness of being treated for cancer and nevertheless protected against getting infected in a cancer center of public health reorganized to continue treating patients by protecting them and personnel from the risk of infection. Conclusions: The experience of a cancer diagnosis, together with proper hospital reorganization, may act as protective factors from fears and psychological consequences of the COVID-19 outbreak.

An Examination of Partner Perceptions of Partner Rotation: Direct and Indirect Consequences to Audit Quality

2012 ◽  
Vol 31 (1) ◽  
pp. 97-114 ◽  
Author(s):  
Brian E. Daugherty ◽  
Denise Dickins ◽  
Richard C. Hatfield ◽  
Julia L. Higgs
Keyword(s):  
Quality Of Life ◽  
Audit Quality ◽  
Negative Impact ◽  
Survey Instrument ◽  
Unintended Consequence ◽  
Data Availability ◽  
Structured Interviews ◽  
Partner Perceptions ◽  
New Industry

SUMMARY Using structured interviews and surveys of practicing audit partners, this study examines their perceptions with regard to mandatory partner rotation and cooling-off periods, and how recently enacted, more stringent rules, may negatively impact auditors' quality of life to the detriment of audit quality. Results suggest rotation, in general, increases partners' workloads and the likelihood of relocation. Additionally, results suggest that in response to accelerated rotation (and an extended cooling-off period), partners would rather learn a new industry than relocate. Importantly, partners perceive audit quality suffers from retraining, but not from relocating. Thus these results suggest an indirect, negative impact, and unintended consequence, of accelerated rotation/extended cooling-off periods on audit quality. Data Availability: The survey instrument is available upon request. Individual audit partner responses are confidential.

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