Quality Of Life Assessment Tools Research Articles

Suffering and Quality of Life Impairment in Patients with Eczematous Diseases: Results from an Observational Study Assessing the Relevance of the Involvement of Two Sensitive Body Sites, Namely, the Face and Hands

Background: Quality of life (QoL) impairment by eczematous diseases, with reference to body site involvement, has not been deeply addressed. Objectives: The aims of this study were to assess: (1) the impact on QoL of eczematous diseases affecting the face or hands; (2) any differences in QoL impairment in the case of face versus hand involvement; (3) sensitivity of Pictorial Representation of Illness and Self Measure (PRISM) and Dermatology Life Quality Index (DLQI) in measuring disease-related burden. Methods: Adults with eczematous diseases of the face or hands were involved. Patients were patch tested and underwent DLQI and PRISM. Results: 143 patients were included, 43.36% with face and 56.64% with hands involvement. PRISM and DLQI scores showed a moderate to strong inverse correlation, but PRISM revealed a higher sensitivity in capturing patients’ suffering than DLQI, especially in the case of face involvement. Itching was the sole parameter significantly associated with both PRISM and DLQI scores. Conclusions: PRISM appeared to be more accurate in detecting the burden of eczematous diseases involving the face, probably due to the interception of the emotional impact, while DLQI, focusing on patient functioning, was more affected by hand involvement. Site involvement could be a criterion for selecting the best QoL assessment tool.

Experiences and Views of Leukemia Patients: A Global Survey

A deeper understanding of patients' experiences with leukemia is necessary given the ongoing discussions about patient-centricity and how to return the patient to the center of care. The Acute Leukemia Advocates Network (ALAN) in collaboration with CLL Advocates Network (CLLAN) and CML Advocates Network (CMLAN) developed a multi-country survey to understand the issues and gather information on the current and emerging treatment landscape, experiences and quality of life (QoL) of adult patients with leukemia. This survey was designed to focus on the patient perspective. This includes but not limited to: experiences through patient journey, the QOL and impact of leukemia on daily life, and what information and support was provided. Analysis of the data identified areas within the patient journey where opportunities exist to improve patient care and experiences. Methods Developed by a panel of expert leukemia patient advocates, the questionnaire was tested twice and comprises sixteen sections with the aim to collect insight and understanding into the patient's experience, rather than the clinical perspective. The questionnaire consists of 200 questions (some with sub-questions) including HM-PRO, a validated QoL assessment tool in those with hematological malignancies. Patients completed the sections relevant to their type of leukemia. Data on relevant patient characteristics, such as gender, age, and countries of residence, were collected in the demographic section. The administration of the questionnaire was web-based, between 18 September 2021 and 07 January 2022 and was made available in 10 languages. It was promoted by ALAN, CLLAN, CMLAN and member organizations via websites, newsletters, emails, and social media channels. Participation was on a voluntary basis therefore may not reflect the perspectives of all leukemia patients. Results There were 2646 respondents with different types of leukemia: acute myeloid leukemia (n=312), acute lymphoblastic leukemia (n=104), chronic lymphocytic leukemia (n=1202), chronic myeloid leukemia (n=896) and other types of leukemia (n=132). Of the 2646 patients who responded to the survey, 56% were female (n=1426), 56% were within the age range 55-74 years old (range <16 to >85), and living situation, employment status and education levels varied. Responses were collected across 76 countries. Respondents were grouped into the designated World Health Organization (WHO) regions; 66% (n = 1749) were from countries assigned to the European region, 14.7% (n=389) from the Americas region, 7.4% (n=195) from the Western-Pacific region, 2.1% (n=56) from Africa region and 1.5% (n=39) from Southeast Asia region. Overall, at diagnosis, 62% (n=1582) partially / did not understood the information provided by their healthcare professional and about half of patients were offered written information on leukemia, while 51% (n=1337) were not offered or directed to any support to help with concerns and worries. The majority of patients reported they would have liked to be provided with information and/or support. Similar numbers are reported while under treatment. 62% (n=1271) of respondents reported that they were not offered a choice of treatment options and half wanted to be more involved in decisions. Similarly, 60% (n=1225) were not offered the option of a clinical trial, but 43% reported they would have liked to have had it offered. Of the patients with childbearing potential, 34% (n=860) reported that fertility preservation was not discussed with their healthcare teams. The majority of respondents (92%, or 2362) said they had to use the internet to find information about their disease, treatments, or any other topic related to leukemia (finances, patients' rights, emotional support, wellbeing, etc.). Conclusion We believe this study is the largest ever conducted among leukemia patients to gather information about their experiences, QoL, and preferences. This study is the only one of a limited number that explores patients' experiences throughout their journey. Our data show that opportunities to provide patients with information / emotional support are still being missed. Additionally, there is still a need to include patients in decision-making and to place them at the center of care (for example, to discuss treatment options and clinical trials, to preserve fertility, etc.), confirming the need to continue discussions on patient centricity.

Differences in Experiences Reported By Patients with Acute and Chronic Leukemia: A Global Survey

The Acute Leukemia Advocates Network (ALAN) in collaboration with CLL Advocates Network (CLLAN) and CML Advocates Network (CMLAN) ran a multi-country survey to provide further evidence on leukemia patient journey, with a focus on the varying experiences of patients with different types of leukemia. The study objectives were to: (1) get a broader picture of experiences through patient journey and how it varies depending on the form of leukemia (2) understand quality of life (QoL) and impact of acute leukemia (AL) on daily life (3) identify issues and extend of which that ALAN were unaware. Methods Developed by a panel of expert leukemia patient advocates, the questionnaire was tested twice and comprises sixteen sections with the aim to collect insight and understanding into the patient's experience, rather than the clinical perspective. The questionnaire consists of 200 questions (some with sub-questions) including HM-PRO, a validated QoL assessment tool in those with hematological malignancies. Patients completed the sections relevant to their type of leukemia. Data on relevant patient characteristics, such as gender, age, and countries of residence, were collected in the demographic section. The administration of the questionnaire was web-based, between 18 September2021 and 07 January 2022 and was made available in 10 languages. It was promoted by ALAN, CLLAN, CMLAN and member organizations via websites, newsletters, emails, and social media channels. Participation was on a voluntary basis therefore may not reflect the perspectives of all leukemia patients. The survey was designed to focus on the patient perspective. The aim was to ask questions that allowed understanding and insight into what the patient had experienced, rather than the clinical perspective. It did not seek to replicate the formal collection of scientific data such as patient preferences. We hypothesized that patients with ALs would report different experiences across their journey than patients with chronic leukemias (CLs). Results There were 2646 respondents: 16% (n=416) had a form of AL (AML (12% - n= 312); ALL (4% - n=104)); CL (79% - n=2098) (CLL (45% - n=1202); CML (34% - n=896)) and 5% (n=132) has other forms of leukemia , 56% (n=1426) were female, 56% were female (n=1426), 56% were within the age range 55-74 years old (range <16 to >85). Living situation, employment status and education levels varied. Responses were collected across 76 countries. Respondents were grouped into the designated World Health Organization regions; 66% (n = 1749) were from countries assigned to the European region. Time to diagnosis in AL was reported to be less than 2 weeks (64% of ALL and 56% of AML respondents), while in CL, it varied from less than 2 weeks to over 2 years, with the majority of patients being diagnosed in less than 3 months. Majority of AL patients (93% ALL, 87% AML) started treatment within less than a week after diagnosis, while it took over 2 years for 41% of CLL respondents. Chemotherapy remains the standard treatment option for ALs while targeted therapy tablets are used for CLs. ALs patients were more likely to report that their side effects had a large impact, compared to those with CL. Fatigue is reported as the main side effects across all the leukemia types, but AL patients seem to be more likely to experience loss of appetite, nausea, sleeping problems than CL patients. AL patients also appeared to be more worried about relapse compared to CL patients (more than 20% reported being "extremely worried). AL and CL patients reported similar physical behavior, social wellbeing, and emotional behavior, however, more than 50% AL patients reported feeling isolated (vs 35% in CLs) and more than 70% had to stop working because of their AL (vs 30% in CLs) with a greater financial impact. Conclusion Although the data reveals differing aspects of AL patients compared to the CL patients, to our surprise, in most areas investigated, they reported similar type of experiences. Where differences are observed, they can be explained by the nature of the disease, the urgency of treatment and the treatments currently available in AL. However, AL patients report greater feeling of isolation, large impact of side effects and impact of work life and finances. In addition, the data help draw attention to areas where further policy and campaigning work should be undertaken (e.g., emotional support) or where efforts should continue to happen (e.g. awareness of leukemia)

Perceived quality of life in patients with heart failure: a cross-sectional study among adults in Kingdom of Bahrain

PurposeThe aim of this study is to assess the perceived quality of life of Bahraini patients with heart failure.Design/methodology/approachA sample of 250 patients aged 18 years and older was recruited using a cross-sectional design. Minnesota Living with Heart Failure Questionnaire version three was employed to obtain data from participants on their socio-demographic characteristics and their perceived quality of life.FindingsThe mean age of patients was 69.0 ± 8.1 years and 78% were males. Almost half of the patients with third/fourth degree heart failure had difficulties in earning a living (48.4%) since they had long periods of hospital stays (49.2%). The quality of life is inversely proportional to the age of the patients with third/fourth degree heart failure (p &lt; 0.001). Most of the patients had a poor quality of life (74.8%); about 21.6% had a moderate quality of life, while only few patients (3.6%) had a good quality of life.Originality/valueThe quality of life among Bahraini patients diagnosed with third/fourth degree heart failure is generally poor. Further, advanced age, low level of education, not currently married and low income were shown to be associated with poor quality of life. A need exists to include a quality of life assessment tool as part of the management of these patients.

Quality of life of children with Phenylketonuria at primary health care center in Cairo Egypt: an exploratory cross-sectional study

ABSTRACT Phenylketonuria (PKU) represents a common inborn error of metabolism. PKU management is complicated and bothersome; multiple challenges may represent strains on the Quality Of Life (QOL) of both children and their parents. We aimed to assess QOL among PKU children and to identify diversified factors affecting their parents’ QOL. An exploratory cross-sectional study was conducted among a calculated random sample of 120 PKU children attending a primary health care center in Cairo. A structured interview questionnaire included the QOL assessment tool ‘PedsQL questionnaire’ while the impact of the dietary plan on the family’s daily life was inquired upon utilizing the ‘PKU-QOL questionnaire’. Our results revealed a positive history of similar cases (PKU) in the family reported by 35 cases (29.1%). QOL was very high in children under 5 years and tended to decrease afterward. Children aged five years or more had low scores in all QOL domains. Dietary management of PKU represented a financial burden on nearly two-thirds of families. Parents of PKU children face difficulties in the management of dietary protein restriction; this includes (feeling sad about dietary restriction, worrying that the child might secretly eat forbidden food, and calculating the allowed protein in their children’s diet) and they also suffer from the daily expenses of PKU diet.

Changes in postoperative quality of life of pediatric total colonic aganglionosis patients: effect of pull-through technique.

To assess mid-/long-term quality of life (QOL) of total colonic aganglionosis (TCA) patients. Modified pre-existing QOL assessment tools for general lifestyle (GL), bowel function (BF), and mental health (MH) were administered to postoperative TCA patients from five institutions, who were at least 7years old to compare Duhamel (with pouch) and Swenson/Soave (without pouch) techniques between children (Ch 7-12years old), teenagers (Tn 13-19), and adults (Ad 20 and over). For MH, caregivers were also interviewed, but separately. Maximum scores were 12 for GL/MH and 18 for BF. There were 32 subjects. GL and BF scores increased significantly from Ch (GL 4.8 ± 2.5, BF: 11.3 ± 4.6) to Tn (GL 7.8 ± 2.6, BF 16.2 ± 3.0); scores for MH did not change significantly. Mean caregiver MH scores were significantly lower than mean subject MH scores for all age groups (subject scores: 10.1, 10.7, 10.7 versus caregiver scores: 6.8, 7.8, 8.1 for Ch, Tn, Ad, respectively). PT technique/presence of a pouch did not influence the incidence of enterocolitis or QOL scores. MH responses showed subjects felt better than caregivers believed. This discrepancy could cause conflict despite steadily improving GL/BF. QOL was unaffected by PT technique/presence of a pouch.

Using the Pelvic Floor Impact Questionnaire to Improve Urinary Incontinence Assessments for Female Veterans

ObjectiveTo evaluate quality of life (QoL) in female veterans by comparing responses of the Pelvic Floor Impact Questionnaire (PFIQ-7) before and after a chosen treatment for urinary incontinence (UI), determine whether a QoL assessment was being completed for each woman seeking care for UI, and review the PFIQ-7 questionnaire scores to ensure the veterans were offered the appropriate levels of treatment. DesignQuality improvement project using the plan–do–study–act cycle for evaluating change. Setting/Local ProblemA Veterans Affairs Medical Center in the midwestern United States. No standardized education or QoL questionnaire was being used for female veterans diagnosed with UI before implementation of the project. ParticipantsTwenty female veterans diagnosed with stress or mixed UI who had completed Kegel exercises or pelvic floor rehabilitation (PFR) and a pre- and posttreatment PFIQ-7. Interventions/MeasurementsThe Veterans Affairs Medical Center incorporated the PFIQ-7 into routine practice for pre- and posttreatment assessment of UI. Data were collected through a retrospective chart review. ResultsThe mean initial PFIQ-7 score for participants (n = 4) who chose PFR was 71.77 (SD = 82.79). The mean final PFIQ-7 score for participants in the PFR group was 43.99 (SD = 63.34). The mean initial PFIQ-7 score for participants who chose Kegel exercises was 71.72 (SD = 34.92), and the final score was 60.71 (SD = 44.98). When comparing pre- and posttreatment scores, a lower score means there was a positive effect from the treatment and reflects an improved QoL. ConclusionThe addition of the QoL assessment tool assisted staff in developing an individualized plan of care for female veterans. Regardless of treatment option chosen, participants who did not show an overall improvement in the pre- and posttreatment QoL scores were referred to a more advanced level of care.

Effect of Early and Intensive Telephone or Electronic Nutrition Counselling Delivered to People with Upper Gastrointestinal Cancer on Quality of Life: A Three-Arm Randomised Controlled Trial.

Background: Delay in dietetic service provision for upper gastrointestinal cancer exacerbates disease-related malnutrition and consequently increases morbidity and mortality. Dietetic services are usually referral-based and provided face-to-face in inpatient or outpatient settings, which can delay the commencement of nutrition care. The aim of this study was to provide intensive dietetic intervention close to the time of diagnosis for upper gastrointestinal cancer and assess the effect on quality-adjusted life years. Methods: A three-arm randomised controlled trial of adults newly diagnosed with upper gastrointestinal cancer was performed. A behavioural-based, individually tailored, symptom-directed nutrition intervention was provided in addition to usual care, delivered by a dietitian using a telephone (synchronously) or a mobile application (asynchronously) for 18 weeks, compared with a usual care control group. Data were collected at baseline, three, six, and twelve months post-randomisation. The primary outcome was quality-adjusted life years (EQ-5D-5L quality of life assessment tool). Data were analysed using linear mixed models. Results: One hundred and eleven participants were randomised. Quality-adjusted life years were not different in the intervention groups compared with control (telephone: mean (95% CI) 0.04 (0.43, 2.3), p = 0.998; App: −0.08 (−0.18, 0.02), p = 0.135) after adjustment for baseline, nutrition risk status, age, and gender. Survival was similar between groups over 12 months. The asynchronous mobile app group had a greater number of withdrawals compared with the telephone group. Conclusion: Early and intensive nutrition counselling, delivered at home, during anticancer treatment did not change quality-adjusted life years or survival over 12 months compared with usual care. Behavioural counselling alone was unable to achieve nutritional adequacy. Dietetic services delivered asynchronously using a mobile app had low acceptance for patients undergoing anticancer treatment. Trial Registration: 27 January 2017 Australian and New Zealand Clinical Trial Registry, ACTRN12617000152325.

Quality of life in childhood advanced cancer: from conceptualization to assessment with the Advance QoL tool

BackgroundAdvanced childhood cancer, a condition with no available cancer-focused treatment options, greatly impacts Quality of Life (QoL). We need appropriate assessment strategies to select adapted treatment targets, improve care and optimize communication. Our first goal was to identify the domains of patients’ QoL by combining for the first time the perspectives of patients and parents with previously collected reports in professionals. Our second goal was to develop a simple QoL assessment tool and optimize its format and content for use in the childhood advanced cancer population.MethodsTo identify QoL domains, we conducted qualitative interviews with 7 young patients (4 girls, 3 boys, aged 13 ± 4 yrs) and 9 parents (7 mothers, 2 fathers) from our treatment centre. We used inductive thematic content analysis to code and categorize respondents’ viewpoints. The first version of the tool (Advance QoL) was then drafted, and structured feedback was collected through interviews and a survey with 15 experts. We computed content validity indices.ResultsApart from the physical, psychological, and social domains, participants insisted on four original themes: autonomy, pleasure, the pursuit of achievement, and the sense of feeling heard. This was in line with the categories found in a preliminary study involving professionals (PMID: 28137343). Experts evaluated the tool as clear, relevant, acceptable, and usable. They formulated recommendations on instructions, timeframe, and item formulations, which we implemented in the refined version.ConclusionsAdvance QoL is an innovative tool targeting key life domains in childhood advanced cancer. It is focused on preserved abilities and targets of care. The refined version is appropriate for adult respondents within families and professionals. Future studies will develop versions for young ages to collect the experience of patients themselves. This will open on future reliability, validity, sensitivity, and implementation studies.

Quality of Life within Horse Welfare Assessment Tools: Informing Decisions for Chronically Ill and Geriatric Horses.

Simple SummaryEquine Quality of Life is an important concern in decision making in veterinary medicine and is especially relevant for chronically ill or aged horses when euthanasia is considered. To our knowledge, there is no assessment tool for chronically ill or aged horses that assesses equine Quality of Life defined as the horse’s evaluation of their life. However, tools exist to assess equine welfare in different contexts. Therefore, this study aimed to analyse how equine welfare, Quality of Life, well-being and happiness assessment tools define and attempt to measure these concepts. We discuss the tools’ suitability to assess equine Quality of Life in the context of end-of-life decisions for chronically ill or aged horses. Fourteen publications were found via a systematic literature search, describing ten equine welfare assessment tools and one approach to assessing equine Quality of Life in veterinary practice. Some of these welfare assessment tools have the potential to inform the development of a Quality-of-Life assessment tool supporting well-considered decision making towards the end of horses’ lives if they are adjusted to focus on the horses’ experiences, to provide an overall grade of Quality of Life and are tailored to chronically ill or geriatric horses.Equine Quality of Life (QoL) is an important concern in decision making in veterinary medicine and is especially relevant for chronically ill or geriatric horses towards the end of their lives. To our knowledge, there is no currently available QoL assessment tool for chronically ill or geriatric horses that assesses equine QoL defined as the horse’s evaluation of their life. However, tools exist to assess equine welfare in different contexts. Hence, the aims of this study were to analyse how equine welfare, QoL, well-being and happiness assessment tools label, define and operationalise the concepts and to discuss the tools’ suitability to assess equine QoL in the context of end-of-life decisions for chronically ill or geriatric horses. Fourteen articles were found through a systematic literature search, describing ten equine welfare assessment tools and one approach to integrating equine QoL in veterinary practice that suggests QoL assessment parameters. We discuss that some welfare assessment tools have the potential to support the development of a QoL assessment tool informing decisions towards the end of horses’ lives if they are adjusted to focus on the horses’ experiences, to provide an integration into an overall QoL grade and are tailored to chronically ill or geriatric horses.

Health-related quality of life in patients with neurofibromatosis 1 in Japan: A questionnaire survey using EQ-5D-5L.

Neurofibromatosis 1 (NF1) is a genetic disorder characterized by various symptoms including dermatological, neurological, and osseous manifestations. These complications often cause cosmetic or functional disturbances, resulting in a significant impact on quality of life (QOL). However, there are limited data on QOL of individuals with NF1 in Japan. Therefore, we studied health-related QOL in patients with NF1 compared with that in general populations and the association with severity grade using EQ-5D. A cross-sectional study was conducted for 73 adult NF1 patients (26 males and 47 females; mean age, 44.16 years). The EQ-5D-5L values and visual analog scale (VAS) in patients with NF1 were 0.738 ± 0.137 and 69.93 ± 19.14, respectively. Both scores were significantly lower in patients with NF1 than in healthy volunteers (p < 0.0001). The score for anxiety/depression was the highest among the five items of EQ-5D. Although we investigated differences in the index value and VAS between stage 2 or less and stage 3 or higher, there was no difference in the scores between groups related to certification criteria for the public medical expenses subsidy system. EQ-5D-5L is a valuable assessment tool for health-related QOL in patients with NF1, but it might not be sufficient for severity certification of NF1 in Japan. We would need the revision of the current certification based on the patients' demand in the future. Our findings might be useful for assessment of therapeutic effects and appropriate resource allocation in the care of patients with NF1.

Lived experiences of patients implanted with left ventricular assist devices

BackgroundBesides survival, improvement in quality of life (QoL) is a major aim of left ventricular assist device (LVAD) implantation. QoL assessment tools in current use are effective in the gathering of standardized metrics but are limited in their ability to elucidate everyday lived patient experiences that also affect overall patient wellbeing. ObjectiveTo describe and understand the lived experiences of patients undergoing long-term circulatory support with LVAD. MethodsA phenomenological approach was used. Purposive sampling of consecutive willing inpatients and outpatients living with an LVAD for longer than 6 months was conducted until theme saturation. There were a total of 21 patients interviewed and this was then recorded and transcribed. ResultsA total of eight themes emerged from the data. Overall, the patients’ quality of life was affected by: (1) whether they had experienced improvements or setbacks in their recent health condition, (2) experiencing burdens from their device such as weight and handling, (3) limitations in their physical ability such as participating in sports, their inability to work; or reduced sleep, (4) reduced social interactions; (5) reduction in sexual activity and performance; (6) experiencing emotional and psychological problems and experiencing anxiety. Patients highlighted the value of obtaining (7) support from family and friends. The interviews also revealed that some patients experienced the feeling of (8) optimism and obtaining “a second chance” at life. ConclusionsLVAD patients have unique concerns and lived experiences. Some themes emerging from this interview series such as having to give up work, having reduced social contact, reduced sexual activity and emotional problems, family support structures demand careful attention during the pre-implantation counselling and post implantation ongoing care. These aspects also deserve more attention in quality of life studies among LVAD patients. Patients with recent improvements in health reported a more positive outlook. Overall the majority of patients reported feeling that they obtained a second chance at life.

Quality of life among women with a diagnosis of pelvic organ prolapse at Felege Hiwot Comprehensive Specialized Hospital, Bahir Dar, Northwest Ethiopia: an institutional based cross-sectional study.

Pelvic organ prolapse is among the most common gynecologic problems worldwide. It greatly influences women's quality of life. However, research regarding the effect of pelvic organ prolapse on quality of life is limited in our study area. An institutional-based study design among women with the diagnosis of pelvic organ prolapse at Felege Hiwot Comprehensive Specialized Hospital was employed from May to July 2018. Interviewer-administered questionnaire and Prolapse Quality of Life assessment tool were used to collect data. Gynecologic speculum examination was done to collect objective data. Data were entered into Epi info version 7 and then exported in to SPSS, version 20.0, for analysis. Descriptive statistics and logistic regression were used. All the statistical tests were significant at P < 0.05. The average prolapse quality of life score was 48.35 ± 22.75 SD. The physical limitation (score: 69.83 ± 28.77 SD) and general health perception (score: 67.39 ± 20.26 SD) domains were the most affected life domains. Younger age (AOR = 3.02 [95% CI: 1.22-7.45]), being illiterate (AOR = 3.52 [95% CI: 1.12-11.10]), and having stage IV POP (AOR = 2.84 [95% CI: 1.16-7.00]) were associated with lower quality of life. The QOL score showed huge variability among the study participants. The physical limitation and general health perception domains were most affected. Being illiterate, being < 35 years old, and having stage IV pelvic organ prolapse were the factors associated with lower quality of life.

Quality of life of patients on home parenteral nutrition at a regional centre

Home parenteral nutrition (HPN) is the primary treatment for patients with intestinal failure (IF). Quality of life (QOL) of patients receiving home parenteral nutrition is well documented by Baxter et al.1 A QOL assessment tool (HPN-QOL©) has been developed and validated specifically for this patient population. Other QOL assessment tools have been developed.2 We assessed the QOL of our current cohort throughout 2019-2020.

Lived Experiences of Patients Implanted with Left Ventricular Assist Devices

<h3>Purpose</h3> Besides survival, improvement in quality of life (QoL) is a major aim of left ventricular assist device (LVAD) implantation. QoL assessment tools in current use are effective in the gathering of standardized metrics but are limited in their ability to elucidate everyday lived patient experiences that also affect overall patient wellbeing. Objective: To describe and understand the lived experiences of patients undergoing long-term circulatory support with LVAD. <h3>Methods</h3> A phenomenological approach was used. Purposive sampling of consecutive willing inpatients and outpatients living with an LVAD for longer than 6 months was conducted until theme saturation. 21 patients were interviewed, and the interviews were recorded and transcribed. Thematic analysis was conducted to characterize how the patients experienced the effects of the implant on their quality of life. <h3>Results</h3> Nine themes emerged from the data. Overall, the patients' quality of life was affected by: (1) whether they had experienced improvements or setbacks in their recent health condition, (2) experiencing burdens from their device such as weight and handling, (3) limitations in their physical ability such as participating in sports, their inability to work; or reduced sleep, (4) reduced social interactions; (5) reduction in sexual activity and performance; (6) experiencing emotional and psychological problems and (7) experiencing anxiety. Patients highlighted the value of obtaining (8) support from family and friends. The interviews also revealed that some patients experienced the feeling of (9) optimism and obtaining "a second chance" at life. <h3>Conclusion</h3> LVAD patients have unique concerns and lived experiences. Some themes emerging from this interview series such as having to give up work, having reduced social contact, reduced sexual activity and emotional problems, family support structures demand careful attention during the pre-implantation counselling and post implantation ongoing care. These aspects also deserve more attention in quality of life studies among LVAD patients. Patients with improvement in recent health condition reported a more positive outlook. Overall the majority of patients reported feeling that they obtained a second chance at life.

Longitudinal analysis of quality of life of patients on home parenteral nutrition at a regional centre

Home parenteral nutrition (HPN) is the primary treatment for patients with intestinal failure (IF). Quality of life (QOL) of patients receiving home parenteral nutrition is well documented by Baxter et al.1 A QOL assessment tool (HPN-QOL©) has been developed and validated specifically for this patient population. We assessed the QOL in our HPN cohort in 2016 and throughout 2019-2020. This study assesses the impact of HPN on QOL over time in this cohort. We aimed to determine if there was a significant change in relation to different aspects of QOL.

Quality of Life among Caregivers of Patients Diagnosed with Major Chronic Disease during COVID-19 in Saudi Arabia.

Quality of life (QoL) is considered one of the measures of health outcomes. Limited research studies have assessed family caregivers’ QoL, especially among patients diagnosed with chronic disease. This study measures the QoL of caregivers who guardian patients diagnosed with cardiovascular disease, diabetes, cancer, and/or other diseases during the COVID-19 pandemic. Participants were primary caregivers who were supporting, in the last six months, individuals diagnosed with one of the previously mentioned chronic diseases. This included caregivers of patients admitted to a tertiary hospital from January 2021 to July of the same year (n = 1081); all participants completed the World Health Organization Quality of Life Assessment tool (WHOQOL-BREF) questionnaire. Caregivers of patients with cancer reported the highest mean level of QoL, followed by diabetes, cardiovascular diseases, then other different diseases (M = 3.80; M = 3.38; M = 3.37; and M = 2.51, respectively). A chi-square test of independence was performed to examine the relationship between the QoL of the four groups and their behaviors (i.e., caregivers’ psychological onuses and physical actions/reactions). The relation between these variables was significant, X2 (3, n = 1081) = 8.9, p = 0.001. The Kruskal–Wallis test indicated significant differences among the four groups (p ≤ 0.001). While the overall results of the QoL level of participants were low, a major recommendation of this study was to incorporate a QoL assessment to caregivers of chronically ill patients. Regular psychological and physical health check-ups of caregivers should be mandated in the healthcare system. Research studies should consider investigating and identifying the factors affecting health outcomes and positive developments which have a great impact on the wellbeing of both caregivers and patients on personal, organizational, and national levels.

Abstract P4-12-03: Assessment of quality of life (QoL) in patients with metastatic breast cancer (MBC) in clinical practice: A real-world multi-country survey

Abstract Background: Patient (pt) QoL is a key factor in the treatment (tx) of ABC. There are gaps in real-world evidence of how QoL is assessed in clinical practice. We examined the importance of QoL, its influence on tx decisions, and how it is discussed in a clinical setting from pts’ and healthcare professionals’ (HCPs) perspectives. Methods: The survey was designed by a steering committee of medical oncologists and patients and ethically approved to survey HCPs and patients. Data were collected from July 2020 to May 2021 via a cross-sectional online survey of HCPs (oncologists [Onc] and oncology nurses [OncNu]) and pts with HR+/HER2- ABC in Australia, Brazil, Egypt, Germany, Italy, South Korea, and USA. HCPs were recruited via a 3rd party and surveyed on the management of ABC including the importance of QoL and its assessment in clinical practice. Pts were recruited via HCPs and advocacy groups and surveyed on the importance of QoL, how tx impacts QoL, daily activities, and work, and the frequency of QoL discussions with HCPs. All observations were assessed using a 4-point Likert scale; data were analysed descriptively. Results: 277 Onc, 225 OncNu, and 467 pts with ABC took part in the survey. 221 pts had stage III advanced (locoregionally recurrent not amenable to curative therapy) and 229 had stage IV metastatic disease. 142 pts were receiving first line (1L), 116 second line (2L), and 209 third or later line (3L+) tx. Most HCPs, 88% of Onc and 96% of OncNu, reported asking about QoL at follow-up appointments, where fewer pts report being asked about QoL by Onc (64%) and OncNu (43%). Pts at later line of therapy (LoT) less frequently reported QoL discussions with Onc; 43% of pts at 1L (n=140) reported they were always asked about QoL at follow-up appointments vs 21% at 2L (n=113) and 16% at 3L+ (n=206). Among Onc, importance of QoL for tx decisions increased with LoT; 48% reported that QoL was very important at 1L, 57% at 2L, 79% at 3L, and 85% at 4th line. In contrast, importance of QoL among pts decreased with LoT; while only 39% were comfortable discussing QoL with Onc, 73% at 1L agreed that QoL was important vs 45% at 2L and 40% at 3L+. Among pts who experienced a side effect (SE) that was not discussed with their HCP (n=96), 40% agreed this was because HCPs did not ask about it, and 28% at least moderately agreed they do not report SE as they do not want their Onc to change their tx. 81% of HCPs did not completely agree with the statement “I have enough time to discuss QoL with my pts”. Among those who reported asking pts about their QoL, 93% of HCPs (n=481) reported using questions of their own, while 11% of Onc and 30% of OncNu reported using QoL questionnaires. Only 11% of HCPs agreed that available QoL tools were specific enough to customise for their pts, and only 12% agreed they had access to QoL tools that were integrated with electronic health record systems. Among HCPs (n=341) who were familiar with QoL tools used in clinical trials for ABC, only 10% agreed that these tools were able to accurately reflect QoL, and only 11% agreed that the tools were able to capture improvements in QoL when tx delayed disease progression. Conclusion: We found disconnects between pts with ABC and HCPs around the importance of discussions around QoL; pts report a lower frequency of these discussions in later LoT than HCPs. QoL assessment tools were infrequently used by HCPs, as those currently available were not considered adequate for ABC. QoL should be formally assessed regularly using an ABC-specific QoL assessment tool. This would allow HCPs to address pt issues around QoL through focused discussions to help inform tx decisions. To ensure clinical value, a tool should be quick and easy to use, be able to be completed outside of an appointment setting, yield results that are easy to interpret and compare, and be integrated into medical records. Citation Format: Fatima Cardoso, Julie Rihani, Dawn Aubel, Adam Moore, Victoria Harmer, Nadia Harbeck, Ana Casas, Sina Haftchenary, Purnima Pathak, Eva Schumacher-Wulf. Assessment of quality of life (QoL) in patients with metastatic breast cancer (MBC) in clinical practice: A real-world multi-country survey [abstract]. In: Proceedings of the 2021 San Antonio Breast Cancer Symposium; 2021 Dec 7-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2022;82(4 Suppl):Abstract nr P4-12-03.

Quality of Life Measurement in Dogs and Cats: A Scoping Review of Generic Tools.

Simple SummaryQuality of life (QoL) assessment tools play an important role in veterinary medicine by optimising companion animal welfare and directing treatment decisions. No distinct guidelines are currently available for tool design and appraisal. Nine published generic QoL assessment tools designed for use in dogs and cats were compared to each other. Each tool was uniquely individual in terms of structural design, psychometric evaluation and statistical analysis. Although each tool was unique, the majority assessed similar aspects of dog and cat QoL, namely activity level, the desire for interaction and appetite. These findings provide a reference point for future tool development by emphasizing the need for more consistency in reporting methodology and statistical validation, as well as highlighting potential valuable aspects of QoL in dogs and cats.Quality of life (QoL) assessment in companion animals is an essential aspect of veterinary medicine that helps guide treatment decisions and ensures optimal animal welfare. Veterinarians and pet owners can use disease-specific or generic QoL assessment tools to evaluate an individual animal’s QoL. The aim of this scoping review was to identify and assess published generic QoL assessment tools suitable for use in either dogs or cats. A literature search identified 82 relevant publications, nine of which contained appropriate generic QoL assessment tools in accordance with inclusion and exclusion criteria. Each tool was assessed for evidence of psychometric evaluation including statistical analysis, reliability and validity. Commonly included items were determined to highlight potential important aspects of dog or cat QoL. Five of the nine publications used a statistical method such as factor analysis to determine tool design and structure. Although at least one aspect of reliability and validity was assessed for seven of the tools, none were validated across all measures. Two of the publications contained minimal to no statistical analysis. Common items for both dogs and cats included those regarding activity level, the desire for interaction and appetite. In addition, common items for cats included those regarding mood and grooming. This scoping review identified and evaluated currently available generic QoL assessment tools, providing a reference point for future tool development and validation.

Quality of life and associated factors among patients with epilepsy at specialized hospitals, Northwest Ethiopia; 2019.

Epilepsy is a chronic non-communicable brain disorder and the second most burdensome disease in terms of disability-adjusted life years which is characterized by recurrent epileptic seizures, and a constant threat to the quality of life of the patient. Nearly 80% of people with epilepsy live in low- and middle-income countries and the risk of premature death in people with epilepsy is up to three times higher than for the general population. In many parts of the world, people with epilepsy and their families suffer from stigma and discrimination. This study was aimed to assess the quality of life and associated factors among adult people living with epilepsy using the world health organization quality of life assessment tool. Institution-based cross-sectional study design was conducted on 419 epileptic patients using a systematic random sampling technique. The data were collected using the WHOQOL-BREF questionnaire. The data were entered into EpiData version 3.1 and exported to SPSS version 25 software for further analysis and bivariate and multivariable binary logistic regression analyses were done to identify factors associated with the dependent variable. The level of significance was declared as P value <0.05. A total of 402 epileptic patients with a median age of 28 years were involved in the study. The result of this study was revealed that 47.8% (95% CI: 42%, 52%) of the respondents had poor quality of life. Respondents who were in the middle age group (AOR = 0.36, 95% CI: 0.19, 0.70), lower educational level (AOR = 3.11, 95%CI: 1.35, 7.15), those who had low drug adherence (AOR = 8.36, 95%CI: (2.41, 28.98) comorbid anxiety, (AOR = 3.63, 95% CI: 2.55, 8.42) and depression (AOR = 3.85, 95% CI: 2.16, 6.82) were found to be significantly associated with poor quality of life of epilepsy patients. This study revealed that almost one in two epileptic patients had poor quality of life. Age of the respondents, lower educational level, comorbid anxiety and depression, and lower adherence to drugs were significantly associated with poor quality of life. Therefore, health institutions and clinicians should not focus only on the treatment of the disease itself rather they should address diseases' impact on the quality of life of patients.