Quality Of Life Assessment Tools Research Articles

Dermatology Life Quality Index survey in patients with Down syndrome and caregivers.

Down syndrome (DS) is associated with many dermatological conditions, including hidradenitis suppurativa, folliculitis, and alopecia areata. Despite the high incidence of skin conditions in this population, there are no quality of life (QoL) studies in the dermatology literature focused on patients with DS or their caregivers. The frequently used QoL assessment tool, the Dermatology Life Quality Index (DLQI), has yet to be studied in this population. This study addresses these disparities by capturing how various skin conditions affect the QoL of people with DS and their caregivers and assessing the utility of the DLQI.

A Study to Demonstrate Impact of Active Referral of Acute Leukemia Patients and Families to Patient Organization at Diagnosis

Introduction and background Key factors that relate to worse quality of life (QoL) in acute leukemia patients were identified in a global survey conducted by the Acute Leukemia Advocates Network (ALAN) such as age, gender, socioeconomic state, social functioning (e.g., worries about family and friends, feeling isolated, finances, etc.[ Pemberton-Whiteley et al, 2023]). These factors should be taken into consideration by healthcare professionals caring for acute leukemia patients to enable a robust support system. The role of patient organizations (PO) in the care of the patient and family is becoming increasingly important, however, patients are often not aware of the existence of POs and physicians and providers are often unsure of the role and benefits of PO, which then leads to a delay in patients reaching out to POs (for information, education resources, support resources [support groups, online chat, peer-to-peer support, financial support, psychological support, carer support], etc.). To date, there is limited evidence showing the importance of support offered to patients and their families. The ALAN, the Mayo Clinic and a national PO, are conducting a study that aims to assess both retrospectively and prospectively the benefits of active referrals to PO for patients with acute leukemia. Hypothesis We hypothesize that active referrals of adult patients with acute leukemia to PO at diagnosis has a positive impact on patient-reported outcomes and patient experience. Methods Here we present the study methodology that uses a quantitative method via administration of surveys at different timepoints. We plan to do both a retrospective and prospective evaluation of patients (target N=200) previously referred and new patients with a diagnosis of acute leukemia. There are 4 scenarios which are presented in Figure 1. For patients already diagnosed and evaluated at Mayo Clinic (scenarios 3 and 4), we will contact them either via email or portal message to see if they are interested in the study. A study consent form will be sent to them. If they indicate interest and consent, they will be contacted to understand whether they were referred to or sought help from PO around the time of their diagnosis or subsequently, and a questionnaire will be sent to them to assess if PO services helped them in their disease or treatment course. For newly diagnosed patients (scenarios 1 and 2), active referral to PO using PO referral online form will be provided and they will receive study consent form during their first visit at Mayo Clinic. A questionnaire will be sent to them to understand if they used the services from PO after the referral and if yes, to assess if PO services helped them in their disease or treatment course. In addition, every month from diagnosis up to 6 months, all patients who consented to take part in the study will be asked to complete the validated HM-PRO QoL assessment tool (an instrument designed to measure patient-reported outcomes in those with hematological malignancies), to assess QoL and symptoms and change over time. Conclusion This is a pilot study aiming at building evidence on the importance of support offered to patients and their families and demonstrating the impact of an active referral at diagnosis. 1 Pemberton-Whiteley Z, Nier S, Geissler J, Wintrich S, Verhoeven B, Christensen RO, Salek S, Oliva EN, Ionova T, Bradley J. Understanding quality of life in patients with acute leukemia, a global survey. J Patient Cent Res Rev. 2023;10:21-30

AHP P05 Attendee perceptions of a support group for patients and carers following Oesophageal or Gastric resection

Abstract Background The benefits of patient support groups are widely recognised, playing a vital role in cancer survivorship. Patients undergoing Oesophageal or gastric resection for cancer are presented with an array of unique post operative and life altering symptoms. Patients and carers alike can be profoundly affected as they live with their cancer diagnosis and the impact of the substantial surgery. The ‘Little and Often’ support group was established 16 years ago to support patients and carers in this regard, meetings are held monthly at a hospital site venue and combine informal conversation with Health care professional speakers.as requested by attendees. Methods A survey was conducted at the ‘Little and Often’ support group amongst attendees, patients and carers alike (n=17). The survey was a combination of open questions and rating scales and was submitted anonymously. Patients and carers were also asked to describe their feelings prior to attending the support group, and to describe how they felt after attending the support group to see if attendance had a bearing. The results were collated and reflected upon to inform the format of future support group meetings. Results The results tell us that most patients and carers find the ‘Little and Often’ support group valuable to their cancer journey and survivorship. Many affirmative aspects were identified that had a positive impact on patient experience, and 82% attendees stated there was nothing they did not like about the group. 100% attendees liked having a Health care professional present and accessible at the group. 100% of attendees either strongly agreed or agreed that the group had made an important difference in their life in a safe space that left them with hope for the future. Conclusions This survey reinforces the perceived benefits of patients and their carers attending the Little and Often support group. The format of having a health care professional speak alongside informal conversation was welcomed by the attendees. The group facilitates a patients transition from feeling alone and isolated at times to feeling hopeful, supported, and positive about the future. It would be prudent to repeat this survey on a larger cohort of patient across a longer time scale, a validated quality of life assessment tool can be utilised to monitor the impact of the Little and Often group on patients and carers.

Assessment of quality of life in patients with surgically treated maxillofacial fractures.

Background: The complex nature of maxillofacial injuries can affect the surgical treatment outcomes and general well-being of the patient. To evaluate the efficiency of the surgical treatment, assessment of the quality of life (QOL) of the patients is of vital importance. Due to the absence of an exclusive QOL assessment tool for maxillofacial fractures, we introduce the 'Twenty-point quality of life assessment in facial trauma patients in Indian population'. The aim of this study was to assess and evaluate the QOL following surgical management of maxillofacial trauma patients based on the severity of the injury. Methods: The study consisted of 182 subjects divided into two groups of 91 each (Group A: severe facial injury and Group B: mild to moderate facial injury). The Facial Injury Severity Scale (FISS) was used to determine the severity of facial fractures and injuries. The twenty-point quality of life assessment tool includes Zone 1 (Psychosocial impact) and Zone 2 (Functional and aesthetic impact), with ten domains each to assess QOL. Results: In Zone 1, the mean scores for Group A and Group B were 38.6 and 39.26, respectively. In Zone 2, Group B (44.56) had higher mean scores compared to Group A (32.92) (p< 0.001). Group B (83.8) had higher mean scores compared to Group A (71.58) when the total of both Zone 1 and Zone 2 were taken into consideration (p<0,001). In Group A, 9 out of 91 patients had a total score of 81- 100 compared to 68 in the same range in Group B. Conclusions: Proper surgical management with adequate care to the hard and soft tissues can improve the QOL by reducing postoperative psychosocial and functional complications. Aesthetic outcomes play an important role in determining the QOL. Mild/ Moderate injuries show better QOL compared to severe maxillofacial injuries.

Quality-of-Life Assessments in Zoo Animals: Not Just for the Aged and Charismatic.

Zoos should aim to provide all of their animals with a good quality of life (QoL) throughout all life stages. In parallel with the evolution of QoL assessment questionnaires and tools in human and domestic animal settings, in recent times, some individual zoos and zoo industry associations have incorporated such instruments into their animal management practices. This has been conducted predominantly to inform, monitor, and document end-of-life decision-making for large, charismatic mammals. There is scope to expand the use of these tools to improve their utility, validity, reliability, and value to an animal welfare program. Assessment of QoL is a complex task given that the notion being measured is abstract and self-determined, and the design and purpose of the tools to do this require careful consideration. This review explores the QoL concept as it applies to animals, the assessment indications and methodologies relevant to a zoo setting, and the importance of considering QoL at any life stage across species. An overview of current thinking and the applications and limitations of QoL evaluation of captive wild animals is offered to promote and aid facility practice reviews and to help direct future innovations that leverage concurrent and converging advances in zoo animal welfare science.

A Visual Analog Scale for Self-Reported Quality of Life: A Comparison of VAS and QoL-AD in Older Adults.

People with dementia (PWD) are one of the fastest-growing clinical populations for speech-language pathologists. Self-reported quality of life (QoL) assessments are critical patient-reported outcome measures that align with person-centered care principles. However, proxy-reporting is most often used due to assumptions that PWD cannot provide reliable self-report. Visual analog scales (VASs) have been successfully used with people with expressive and cognitive deficits to measure subjective constructs such as QoL, mood, and pain. The purpose of this project is to evaluate the feasibility and reliability of a VAS QoL assessment tool. Twenty older adults free of cognitive impairment were assessed using the quality of life in Alzheimer's disease (QoL-AD) and the QoL-AD in combination with a VAS (VAS QoL-AD). The construct validity, internal consistency, and test-retest reliability of the VAS QoL-AD were assessed by performing both assessments twice, 4 weeks apart. Significant correlations between the overall VAS QoL-AD and the QoL-AD scale ratings, between most of the QoL-AD and VAS QoL-AD subtests, and between the first and second assessment scores were observed. Results indicated strong construct validity, internal consistency, and test-retest reliability of the VAS QoL-AD in people without dementia. These results warrant further research into the development of a dementia-specific, self-reported VAS QoL scale for PWD.

The Relationship between Supportive Care Needs and Health-Related Quality of Life in Cancer Patients.

The aim of this study was to analyze the relationship between quality of life (QoL) and supportive care needs (SCNs) in cancer patients. It is difficult to relate SCNs to detriments in QoL since SCNs and QoL assessment tools generally comprise different dimensions that cannot be directly related to each other. Therefore, we developed a short questionnaire with eight dimensions for uniformly measuring SCNs, QoL, and the subjective importance of these dimensions. A total of 1108 cancer patients with mixed diagnoses assessed eight dimensions of health-related QoL concerning SCNs, satisfaction, and importance. Among the eight dimensions of QoL, physical functioning received the highest SCN assessments (M = 3.4), while autonomy (M = 20.7) and social relationships (M = 1.88) were the dimensions with the lowest SCN mean scores on the 1-5 scale. For each of the eight dimensions, high levels of SCNs were reported by those patients who had low levels of satisfaction with that dimension (r between -0.32 and -0.66). The subjective importance of the dimensions was not consistently correlated with SCNs (r between -0.19 and 0.20). Females reported higher SCNs than males in six of the eight specific dimensions. Patients with prostate and male genital cancers reported the lowest SCNs. These results suggest gender-specific SCN patterns that warrant further exploration. This study highlights the value of a unified assessment instrument for SCNs and QoL, providing a robust basis for future cancer care strategies.

Osteopathic manipulative treatment in improving symptoms and quality of life in patients with Graves’ ophthalmopathy: A case report

BackgroundGraves' Disease (GD) is an autoimmune disorder, with ∼50% of GD patients developing Graves’ Ophthalmopathy (GO). Common presentations include lid retraction, exophthalmos, disfigurement, ocular pain, and pressure. Treatment of GD depends on disease severity, ranging from artificial tears to ocular surgeries. Patients with GO symptoms experience a decreased quality of life (QoL) and could benefit from additional treatment options. ObjectiveThis case report describes the use of osteopathic manipulative treatment (OMT) as an adjunct to standard care for a patient with symptomatic GO, and measurement of treatment response with a standardized QoL assessment tool. Clinical featuresClinical evaluation of a patient with GO showed clinical activity score to be 4 with oppressive feeling behind globes, hyperemia, and eyelid edema. Corneal displacement measured by Hertel exophthalmometer indicated increased proptosis. CT scan showed enlarged extraocular muscles bilaterally, with signs of edema in retrobulbar fat. Visual acuity and optic nerves were within normal limits. Intervention and outcomesThis case report demonstrates the use of OMT in long-term reduction of ocular pain and pressure by relieving orbital myofascial tension along with improving ocular circulation, in a patient with GO. Using the European Group On Graves’ Orbitopathy QoL questionnaire, the patient noted better quality of life (93, 81.3 for pretreatment visual and appearance scores, respectively, and 100, 87.5 for post-treatment visual and appearance scores, respectively) and perceived reduced exophthalmos. ConclusionsProviding OMT as a cost effective, non-invasive treatment option for GO symptoms could meet a significant need for GO patients and warrants further study.

The impact of nurse-led patient education on quality of life in patients with heart failure

Heart failure is a complex condition where the heart is unable to pump blood effectively because of a structural or functional abnormality. This condition is associated with a substantial human and economic burden, with a particularly high impact on patients' quality of life. However, previous research suggests that patient education, which is often delivered by nurses, can help to reduce the burden of heart failure, both for patients and healthcare services. This review aimed to assess the impact of nurse-led patient education programmes on the quality of life among patients with heart failure. Key electronic databases (MEDLINE, CINAHL, PsycINFO and Web of Science) were searched from inception to February 2022. Studies of adults with heart failure who received in-person nurse-led patient education using a quality of life assessment tool were included. Of the 2225 studies retrieved in the initial search, 18 were included in the final review, including a total of 2413 participants. Physical health was assessed across all studies, with some variation in the findings, particularly in relation to the impact of patient education on mortality rates. However, positive mental health outcomes were reported in intervention groups across selected studies, with one study reporting significant improvement at 12 months compared to a control group (P=0.038). This indicates that nurse-led patient education can improve some aspects of patients' quality of life, reinforcing the importance of this aspect of nursing care in heart failure management, while also highlighting areas in need of further research.

Assessment of quality of life in patients with surgically treated maxillofacial fractures

Background: The complex nature of maxillofacial injuries can affect the surgical treatment outcomes and general well-being of the patient. To evaluate the efficiency of the surgical treatment, assessment of the quality of life (QOL) of the patients is of vital importance. Due to the absence of an exclusive QOL assessment tool for maxillofacial fractures, we introduce the ‘Twenty-point quality of life assessment in facial trauma patients in Indian population'. The aim of this study was to assess and evaluate the QOL following surgical management of maxillofacial trauma patients based on the severity of the injury. Methods: The study consisted of 182 subjects divided into two groups of 91 each (Group A: severe facial injury and Group B: mild to moderate facial injury). The Facial Injury Severity Scale (FISS) was used to determine the severity of facial fractures and injuries. The twenty–point quality of life assessment tool includes Zone 1 (Psychosocial impact) and Zone 2 (Functional and aesthetic impact), with ten domains each to assess QOL. Results: In Zone 1, the mean scores for Group A and Group B were 38.6 and 39.26, respectively. In Zone 2, Group B (44.56) had higher mean scores compared to Group A (32.92) (p&lt; 0.001). Group B (83.8) had higher mean scores compared to Group A (71.58) when the total of both Zone 1 and Zone 2 were taken into consideration (p&lt;0,001). In Group A, 9 out of 91 patients had a total score of 81- 100 compared to 68 in the same range in Group B. Conclusions: Proper surgical management with adequate care to the hard and soft tissues can improve the QOL by reducing postoperative psychosocial and functional complications. Aesthetic outcomes play an important role in determining the QOL. Mild/ Moderate injuries show better QOL compared to severe maxillofacial injuries.

Systematic literature review of quality-of-life questionnaires in Waldenström macroglobulinaemia-need for a disease-specific tool.

Systematic literature review of quality-of-life questionnaires in Waldenström macroglobulinaemia-need for a disease-specific tool.

Awareness and Use of Canine Quality of Life Assessment Tools in UK Veterinary Practice

The use of formal canine quality of life (QOL) assessment tools in veterinary practice has been recommended. An online survey investigated awareness, use and barriers to use of these tools in the UK. An anonymous 24-question survey was advertised through veterinary groups and social media. Ninety veterinary surgeons and twenty veterinary nurses responded. Thirty-two respondents (29.1%) were aware of the existence of formal canine QOL assessment tools. Of the three tools listed, current use was less than four per cent. No statistically significant influence of respondent age, role (veterinary surgeon or nurse) or possession of additional qualifications was found on the awareness of QOL tools (p > 0.05). Over half of respondents (55.5%) would 'certainly' or 'probably' be willing to use a QOL assessment tool. The main barrier to use was lack of time. Other barriers included a perceived resistance from owners. Although current use and awareness of canine QOL assessment tools in UK veterinary practice is low, veterinary professionals appear willing to use the tools within their daily practice. This discrepancy implies that QOL assessment tools are not well disseminated to veterinary surgeons and nurses in practice and that various barriers inhibit their use.

Unmet needs in ANCA-associated vasculitis: Physicians' and patients' perspectives.

In recent years, clinical research has increased significantly and therapies for antineutrophil cytoplasmic antibody (ANCA)-associated vasculitis have improved. However, there are still unanswered questions and unmet needs about AAV patients. The purpose of this review is to examine the frontiers of research related to emerging biomarkers eventually predicting relapse, and new therapeutic approaches, not to mention new quality of life assessment tools. Identifying predictors of relapse may help optimize therapeutic strategies, minimize disease recurrence, and reduce treatment-related side effects. In addition, it is important to recognize that patients may suffer long-term consequences of the disease and its treatment, which, although life-saving, is often associated with significant side effects. Our goal, therefore, is to highlight what has been achieved, the pitfalls, and what still needs to be done, comparing the views of physicians and patients.

Quality of life in Hidradenitis Suppurativa (Acne Inversa): A scoping review.

Hidradenitis Suppurativa (HS) is a chronic, relapsing, inflammatory skin condition which is physically, psychologically and socially disabling and often affects a patient's quality of life (QOL). There are numerous QOL tools used in dermatology. However, assessment of QOL in patients with HS is difficult due to the inability of generic QOL tools to specifically capture QOL in patients with HS. Numerous HS-specific QOL tools have been developed in recent years. It is important to identify evidence on full psychometric evaluation of these tools. There has been a gradual increase in the use of generic and disease-specific QOL tools in the last few decades. The aim of this scoping review (SR) is to evaluate the most widely used generic QOL tools and HS-specific QOL tools to identify the psychometric evaluation of such tools. Design: An SR guided by Joanna Briggs Institute manual and Arskey O'Malley framework guidelines. Data extraction included the studies available on full psychometric evaluation of the most widely used dermatology generic QOL tools in HS and HS-specific QOL tools. Ten papers were included in the review, eight papers demonstrated HS-specific QOL assessment tools. The psychometric properties of these tools were underpinned by reliability, validity and sensitivity measurement. Six disease-specific tools were identified in this SR. However, they all lack full psychometric evaluation. This review indicates that an extensive research in the field of QOL tools for HS is much needed. It is crucial to develop user-friendly and validate disease-specific tools to measure the real impact of disease on patients QOL. QOL instruments can evaluate the impact on life of an HS patient, thus helping improve intervention and management of disease. There is a necessity for more research into existing HS-specific QOL tools and they should be widely tested and fully validated.

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.

Plateletcrit is a Useful Marker in the Quality of Life Assessment of Patients with Rheumatoid Arthritis: A Cross-Sectional Study from Erbil, Iraq.

In patients with rheumatoid arthritis (RA), hematological indices and ratios have been reported to be related to the severity of illness, and thus could potentially be useful determinants of quality of life (QoL). To evaluate the association between hematological indices or ratios, which serve as biomarkers of disease activity, and the QoL of RA patients. This study was carried out in the Rizgary Teaching Hospital in the Kurdistan region of Iraq between December 01, 2021, and March 31, 2022. All female patients with a confirmed diagnosis of RA and aged ≥18 years were included. Data relating to the disease activity score (DAS-28), biochemical measurements of the profile, and hematological indices and ratios were assessed. The QoL of each patient was assessed using the Quality of Life-Rheumatoid Arthritis II (QoL-RA II) and the World Health Organization-Quality of Life (WHOQOL-BREF) scales. A total of 81 participants were included, with a median disease duration of 9 years. The median values of the hematological indices were as follows: mean corpuscular volume, 80 fL; platelet count 282 × 103/mm3; mean platelet volume, 9.7 fL; neutrophil-to-lymphocyte ratio, 2.76; and platelet-to-lymphocyte ratio, 170.5. In six of the eight domains of the QoL-RA II scale, the median score was ≤5, indicating poor QoL. The transformed scores of WHOQOL-BREF domains were <50. Multivariate regression analysis showed significant inverse correlations between plateletcrit and the health domains. The area under the curve of the physical, psychological, and environmental domains was <0.5 at a cutoff value of plateletcrit of 0.25. In RA patients, hematological indices and ratios could serve as a QoL assessment tool, particularly plateletcrit, as higher plateletcrit (≥0.25) were found to negatively impact the physical health, psychological, and environmental domains.

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.