Quality Of Life Issues Research Articles

Quality of life issues in patients with ductal carcinoma in situ: a systematic review.

Ductal carcinoma in situ (DCIS) of the breast is one of the most common pre-invasive cancers diagnosed in women. Quality of life (QoL) is extremely important to assess in studies including these patients due to the favorable prognosis of the disease. The primary objective of this systematic review was to compile a comprehensive list of QoL issues, all existing QoL assessment tools, and patient-reported outcome measures used to assess DCIS. A search was conducted on Ovid MEDLINE, EMBASE, and Cochrane Central Register of Controlled Trials databases from inception to August 2023, using keywords such as "ductal carcinoma in-situ", "quality of life", and "patient-reported outcomes." QoL issues and QoL tools in primary research studies were extracted. A total of 67 articles identified issues pertaining to patients with DCIS spanning physical, functional, and psychosocial QoL domains. Physical and functional issues observed in patients included pain, fatigue, and impaired sexual functioning. Psychosocial issues such as anxiety, depression, and confusion about one's disease were also common. QoL tools included those that assessed general QoL, breast cancer-specific tools, and issue-specific questionnaires. The current instruments available to assess QoL in patients with DCIS do not comprehensively capture the issues that are pertinent to patients. Thus, the modification of existing tools or the creation of a DCIS-specific QoL tool is recommended to ensure that future research will be sensitive towards challenges faced by patients with DCIS.

Correlation Between Health-Related Life Quality and Dyspnea Severity in Aged COVID-19 Survivors in Indonesia

Introduction: COVID-19 is a disease that can severely reduce life quality, particularly in the aged population. The research aim was to establish the correlation between health-related life quality and dyspnea severity within aged COVID-19 survivors.Method: The cross-sectional study was conducted on older COVID-19 survivors at Persahabatan Hospital, Jakarta. The use of WhatsApp® video call and Zoom® video conference applications for audio and video evaluation in data collection. The European Quality of Life-5Dimensions-5L (EQ-5D-5L) and the European Quality of Life-Visual Analog Scale (EQ-VAS) were used to assess health-related quality of life. Modified Borg and modified Medical Research Council (mMRC) dyspnea scale were used to assess dyspnea severity. The data were analyzed using correlation test. Results: Based on 44 data collected, it was found that seven (15.9%) of the participants experienced mild breathlessness, while three patients (6.8%) had severe level of dyspnea on the modified Borg dyspnea scale assessment. The mMRC dyspnea scale assessment indicated that over nine patients (20.4%) had mMRC value greater than one. The study found a significant correlation (p less than 0.01) between the EQ-5D-5L and the modified Borg Dyspnea Scale, particularly in the areas of anxiety or depression (r=0.52), self-care (r=0.51), mobility (r=0.42), and EQ-VAS (r=-0.53). The EQ-5D-5L and the mMRC dyspnea scale showed a significant correlation (p less than 0.01), particularly in relation to usual activities (r=0.69), self-care (r=0.62), and mobility (r=0.65), as well as EQ VAS (r=-0.58).Conclusion: Moderate positive correlations existed between life quality issues including self-care, anxiety, depression and dyspnea severity .

PATIENT AND FAMILY INPUT TO DETERMINE EXPERIENCES AND RESEARCH INTERESTS IN PEDIATRIC PANCREATITIS: AN INSPPIRE-2 STUDY.

The aim of this study was to determine patient reported burdensome experiences and research interests in children with acute recurrent pancreatitis or chronic pancreatitis and their families. Children with pancreatitis and their families completed a web-based survey. Subject prioritized rankings of symptoms or quality of life issues and topics for future research were assessed. Data are presented as family and children scores. Among 80 participants, 18 were children with pancreatitis and 62 were family members. Top 5 ranked symptoms or quality of life issues were:1) pain, 2) fatigue, 3) missing school, 4) upset stomach, and 5) not knowing when an attack will occur. Top 5 ranked future research topics were:1) how to prevent a pancreatitis attack, 2) how pancreatitis affects other parts of the body, 3) ways to treat or handle pain, 4) what is the cause of pancreatitis, and 5) teach doctors about pancreatitis. This study highlights the importance of patient and family input in caring for children with pancreatitis. The most bothersome symptoms were pain, fatigue and upset stomach. Children with pancreatitis and families would like future research to primarily focus on prevention of pancreatitis attacks, pain therapy, and complications of pancreatitis.

Prevention of osteoradionecrosis in patients with head and neck cancer treated with radiation therapy.

Osteoradionecrosis is a long-term, serious side effect of head and neck radiation therapy and is associated with significant morbidity and quality of life issues. This paper sought to determine consensus on the prevention and management of osteoradionecrosis by an international panel of multidisciplinary professionals expert in the management of patients with head and neck cancer using a Delphi methodology. Unique to this work is our direct inclusion of the views of patients and carers in our findings. This study reached consensus on the importance of pre and post oral health assessment and education for patients with head and neck cancer. This was also noted by the patients and carers who took part in the study. This work highlights the need for a standardized oral health assessment tool and multidisciplinary care of patients to prevent and manage osteoradionecrosis.

The natural history of Gaucher disease type 1 in 31 patients over a median of 15 years: a retrospective study.

The natural history of untreated patients with type 1 Gaucher disease (GD1) is not well documented, and there is controversy over when and how to treat such patients, especially if they are only mildly symptomatic. Treatment of GD1 is inconvenient, very costly, and may result in undesirable side effects. We documented the clinical history of 31 untreated patients with GD1 followed in our clinic for 4-26 (median 15) years. This was a retrospective, observational study of the progress of untreated adult patients with GD1 followed by blood tests (haemoglobin, platelet counts, ferritin and chitotriosidase), organ volumes (spleen and liver), bone manifestations (through magnetic resonance imaging and dual X-ray absorptiometry scans) and neurological and quality of life issues. Statistical analyses were performed with the use of the Student paired t test and the modified Wald test for 95% confidence intervals. We found that the above parameters remained stable in most patients over a period of 4-26 (median 15) years. Five patients progressed from normal bone density to osteopenia and two from osteopenia to osteofibrosis; six were peri- or post-menopausal females. The DS-3 was stable over time. Only four of the 31 patients were started on enzyme or substrate reduction therapy. Our results demonstrate that many patients with GD1, provided with close follow-up by a specialist centre, can be followed for many years without requiring treatment and with no or minimal worsening of their GD1 manifestations.

Impact of Phlebotomy on Quality of Life in Low-Risk Polycythemia Vera.

Polycythemia vera is an indolent myeloproliferative disorder that predisposes patients to venous and arterial thrombosis and can transform into myelofibrosis and acute myeloid leukemia. Consistent phlebotomy prevents life-threatening cerebrovascular and coronary artery disease and prolongs survival in low-risk polycythemia vera (patients under 60 years without thrombosis). However, despite its effectiveness in preventing serious complications, phlebotomy does not necessarily enhance the quality of life (QoL). This review assesses QoL issues associated with low-risk PV, explores alternative management strategies such as erythrocytapheresis, and discusses the roles of hydroxyurea, peginterferon, ruxolitinib, and other novel agents in potentially improving disease management and patient outcomes.

Impacts of keratoconus on quality of life: a qualitative study

Background/AimsTo identify the domains of quality of life (QoL) in people with keratoconus.MethodsSemi structured in-depth in person and telephone interviews were conducted with participants diagnosed with keratoconus and recruited from the Sydney Eye Hospital, Sydney, Australia. Thematic analysis of interview content was conducted using inductive and deductive processes. Data was collected until thematic saturation was obtained.Results33 patients with keratoconus with median age 37 (range 18 to 65) years and majority male (n = 25; 75.8%) were interviewed and a total of 2551 quotes coded. Thematic analysis resulted in 7 broad themes, Driving (199 references), Career (259 references), Symptoms (647 references), Enjoyment (149 references), Relationships (250 references), Financial (104 references) and Healthcare (881 references). Most references described a negative relationship between keratoconus and these 7 domains. The diverse QoL issues expressed included frustration with treatment effectiveness, fear of disease progression, inconvenience with contact lenses, forced career changes and job loss, cost of contact lenses, and feelings of isolation and discrimination. Themes and subthemes described a complex and varied relationship between keratoconus and QoL.ConclusionSevere quality of life impairment was experienced by keratoconus patients despite treatment. Keratoconus diminishes various aspects of individual’s QoL. Therapies able to improve QoL are still needed for keratoconus.

Prospective assessment of end-of-life symptoms and quality of life in patients with high-grade glioma

Abstract Background Glioblastoma and high-grade glioma (HGG) remain non-curable diseases. Symptoms and Quality-of-life (QoL) in the end-of-life (EoL) phase have not been prospectively studied with validated instruments. Therefore, we prospectively assessed symptom progression, symptom management, and hospice utilization in patients with treatment-refractory progressive HGG. Methods Patients failing bevacizumab and presenting with a Karnofsky performance score of ≤60, and their caregivers, were eligible. Symptoms, medication, and clinical management were tracked with serial telephone calls every 2 weeks until death utilizing clinical evaluations and the MD Anderson Symptom Inventory Brain Tumor Module (MDASI-BT). The MDASI-BT rates symptoms on a scale from 0 (no symptoms) to 10 (worst). Results Fifty-four patient-caregiver dyads were enrolled in the study. Amongst 50 evaluable patients, the most severe symptoms during the last 2 weeks prior to death were drowsiness (9.09 ± 1.44), difficulty with concentration (8.87 ± 2.29), fatigue (8.63 ± 2.03), difficulty speaking (8.44 ± 2.42), weakness (8.27 ± 3.44), and difficulty with understanding (7.71 ± 2.94). All symptoms, except weakness and memory impairment, which were high at baseline, showed statistically significant progression. Seizures were rare and did not progressively worsen near the end of life (1.38 ± 3.02). The decision-making composite score almost doubled during the EoL phase (8.58 ± 1.53). Conclusions This is the first prospective study describing symptoms and QoL issues in patients with HGG. Patients suffer from high morbidity in the EoL phase and should be offered early palliative and hospice care to assure proper symptom management and advance care planning.

Understanding quality of life issues in patients with advanced melanoma: Phase 1 and 2 in the development of the EORTC advanced melanoma module

AimsWe aimed to develop a European Organization for Research and Treatment of Cancer (EORTC) Quality of Life (QoL) module tailored for patients with advanced (resectable or unresectable stage III/IV) melanoma receiving immune checkpoint inhibitors or targeted therapy. MethodsFollowing the EORTC QoL Group module development guidelines, we conducted phases 1 and 2 of the development process. In phase 1, we generated a list of health-related (HR)QoL issues through a systematic literature review and semi-structured interviews with healthcare professionals (HCPs) and patients with advanced melanoma. In phase 2, these issues were converted into questionnaire items to create the preliminary module. ResultsPhase 1: we retrieved 8006 articles for the literature review, of which 35 were deemed relevant, resulting in 84 HRQoL issues being extracted to create the initial issue list. Semi-structured interviews with 18 HCPs and 28 patients with advanced melanoma resulted in 28 issues being added to the initial issue list. Following EORTC module development criteria, 26 issues were removed, and two issues were added after review by patient advocates.Phase 2: To ensure uniformity and avoid duplication, 16 issues were consolidated into eight items. Additionally, an independent expert contributed one new item, resulting in a preliminary module comprising 80 HRQoL items. ConclusionWe identified a range of HRQoL issues (dry skin, xerostomia, and arthralgia) relevant to patients with stage III/IV melanoma. Future module development phases will refine the questionnaire. Once completed, this module will enable standardized assessment of HRQoL in patients with (locally) advanced melanoma.

Abstract PO4-17-12: Early adherence to adjuvant abemaciclib: Data from the Belgian Medical Need Program

Abstract Patient adherence profiles for adjuvant hormonal therapy combined with abemaciclib in HR+/HER2- High Risk EBC based on real world evidence (RWE) from a Medical Need Program in Belgium Background Following results of MonarchE, demonstrating clinically meaningful improvement in invasive disease-free survival (IDFS) and distant relapse-free survival (DRFS), a 2-year treatment with abemaciclib has been reimbursed in Belgium since May 1st, 2023 for the adjuvant treatment of HR+, HER2–, lymph node-positive (>3 or 1-3 if pT3 or grade 3) early breast cancer (EBC). In this trial, adverse event related treatment discontinuation was reported in 18,5% (8.9% after dose reduction) of which 10.1% in the first 5 months after starting this CDK 4/6 inhibitor. Prior to reimbursement, an early access program was initiated in Belgium on June 28 2022. We studied the proportion of patients estimated to be eligible for the program nationwide who effectively started adjuvant abemaciclib, as well as early treatment discontinuation and dose reductions. Methods The number of eligible patients for the adjuvant abemaciclib Medical Need Program (MNP) was estimated by the Belgian Cancer Registry based on the above mentioned reimbursement criteria for patients registered during the incidence year 2018. The MNP was active in Belgium from June 28 2022 until May 1 2023. Discontinuation rate and proportion with dose reductions were calculated using a nationwide prospective managed monthly updated register of participating patients including information on age at diagnosis, time since therapy start, delivered doses and patient reported adverse events (AE). They all signed an informed consent and agreed to share their registered data after anonymization. Data analysis was retrospective. Descriptive statistics were used. Results In this 10-month period, 840 patients were estimated to be eligible to receive adjuvant abemaciclib in Belgium. A total of 311 patients (309 women, 2 men) were included in the program, 37% of the estimated number of patients. Median age at initiation was 57 y. Median time on treatment was 4.5 months (156 patients >4.5 months on treatment). 21/311 (6.7%) patients discontinued (all causes). 2 patients never started. 10 patients (3.2%) discontinued their therapy without dose reduction. 12/311 (3.8%) had a starting dose of 2 × 100 mg/d. 128/311 (41.1%) had a dose reduction, 96/128 (75%) before 3 months of therapy. In the subgroup of 156 patients starting treatment >4.5 months ago, 16/156 (10.2%) discontinued treatment, 13 patients have not yet been reported. 79/156 (50.6%) required a dose reduction, of which 7 (4.5%) discontinued after dose reduction. The reasons for discontinuation reported: 8/21 (38%) gastro-intestinal intolerance, 3/21 (14.2%) real deterioration in renal function, 8/21 quality of life issues (not specified), 1/21 anal burning sensation and anal fistula, 3/21 asthenia and fatigue. Conclusion Of the estimated eligible patients in Belgium 37 % started with adjuvant abemaciclib. These results illustrate that there is a need to further improve implementation of adjuvant abemaciclib. Early results show that 89.8% of patients receiving adjuvant abemaciclib therapy in Belgium continued their treatment after 4.5 months and 50% of patients needed a dose reduction. Longer follow-up will be needed. Understanding the reasons of discontinuation and early dose adjustments can enable better patient support on adherence. This is a critical capability to ensure optimal patient compliance. Citation Format: Maxime Van Houdt, Marc Michaux, Sevilay Altintas, Ahmad Awada, Jean-Luc Canon, Hannelore Denys, François Duhoux, Guy Jerusalem, Jeroen Mebis, Rosanne Janssens, Isabelle Huys, Barbier Liese, Charlotte Verbeke, Sileny Han, Hans Wildiers, Patrick Neven. Early adherence to adjuvant abemaciclib: Data from the Belgian Medical Need Program [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO4-17-12.

Implementation of the Mind Youth Questionnaire (MY-Q) for routine health-related quality of life screening of adolescents with type 1 diabetes in a large tertiary care center.

Prevalence of diabetes distress and mental health comorbidities among adolescents with type 1 diabetes (T1D) is high. Despite recommendations for routine psychosocial risk assessment, there is little guidance for their implementation. This study aims to describe the implementation and baseline outcomes of the Mind Youth Questionnaire (MY-Q), a validated psychosocial screening tool for health-related quality of life (QoL) including mood, among adolescents living with T1D. Adolescents aged 13-18 years completed the MY-Q from October 1, 2019-April 1, 2023. Baseline characteristics, MY-Q results including categories flagged positive (noting possible areas of concern), debrief duration, and frequency of social work or mental health referral were collected and analyzed using descriptive statistics. A total of 343 adolescents (mean age 15.3 years; 52 % female) completed a baseline MY-Q. Median overall MY-Q debrief time (IQR) was 10.0 min (6.0, 20.0). About 290 (84.5 %) adolescents had at least one of seven categories flagged, most commonly "Family" (61 %). About 30 % of adolescents had "Mood" flagged, and 2.9 % of adolescents were referred to mental health following debrief. Without the need for additional resources, implementation of the MY-Q in a pediatric tertiary care diabetes clinic successfully identified QoL issues and mental health concerns among adolescents with T1D.

(147) Analysis of Sexual Dysfunction Development among Male and Female Living Kidney Donors

Abstract Introduction The need for kidney donations in patients with end-stage kidney disease has continued to exceed the number of deceased donor transplants, signifying the need for the continued growth, sustainability, and success of living kidney donation. Following donation, living kidney donors have excellent survival rates with mixed data regarding long-term outcomes of renal failure, hypertension, and proteinuria. However, no studies to our knowledge have looked at differences in the development of long-term sexual dysfunction following living kidney donation, a potentially serious quality of life issue. Objective To analyze differences in five-year sexual dysfunction outcomes among male and female living kidney donors using the US Collaborative Network within the TriNetX database, a federated network of EMR data from multiple healthcare organizations across the United States. Methods We used the TriNetX database to perform a propensity score-matched cohort study comparing five-year outcomes of sexual dysfunction development among adult (≥18) male living kidney donors (Male) and female living kidney donors (Female) from December 2013 to December 2022. Living kidney donors were defined as the presence of one diagnostic code and one procedural code. Patients were excluded from the study if they had any instance of diagnosed transplant status (by ICD-10) or transplantation procedures (by CPT) prior to the kidney donor status. Patients were matched on age, sex, race, ethnicity, marital status, diabetes mellitus, cardiovascular disease, personal history of genitourinary disease, presence of urogenital implants, mood disorders, BMI, tobacco and alcohol use, and problems related to lifestyle and socioeconomic circumstances. Primary outcomes analysis included 5-year hazard ratio of diagnosed decreased libido, sexual dysfunction (composite of new diagnosed male ED, vaginismus/dyspareunia, infertility, orgasmic disorders, arousal/desire disorders, or unspecified), UTI, and STDs. Secondary outcomes included sex counseling or problems in relationship with spouse or partner. Results There were 2,821 patients in each cohort after matching (Male, Female). Mean age of the cohort was 42.7 ± 12.7, 73.3% were White, and 10.8% were Hispanic/Latino (p >0.05). At 5-years, Kaplan-Meier analysis revealed that the Male donor cohort had a significantly higher hazard ratio (HR) than Female donors for sexual dysfunction (HR: 3.006, 95% Confidence Interval [CI]: 1.761,5.131). Between the cohorts, 39 (1%) Male patients developed ED and ~10 (<1%) Female patients developed vaginismus/dyspareunia within 5 years. No significant difference was found for the development of sexual arousal disorders/desire disorders (0.17% vs 0.06%, p = 0.052), orgasmic disorders (0.03% vs 0.03%, p = 0.99), decreased libido (0.48% vs 0.85%, p =0.94) and STD’s (0.72% vs 0.89%, p = 0.70). For secondary outcomes, no significant difference was found for the 5-year hazard of need for sex counseling or interpersonal relationship issues. Conclusions In our analysis of this large, real-world database, we found that male living kidney donors had higher rates of sexual dysfunction development 5-years post-living kidney donation. While living kidney donation is a safe, viable, and excellent alternative to deceased kidney donation, clinicians and living donors should both be aware about the potential association of developing sexual dysfunction post-donation. Disclosure No.

Symptoms, Mental Health, and Quality of Life Among Patients After COVID-19 Infection: A Cross-sectional Study in Vietnam.

This study was conducted to characterize the symptoms, mental health, quality of life (QoL), and associated factors following the coronavirus disease 2019 (COVID-19) infection. This cross-sectional study included 394 participants previously infected with COVID-19 in Ho Chi Minh City, Vietnam. Mental health was assessed using the 21-item Depression, Anxiety, and Stress Scale (DASS-21). Participants self-reported health-related QoL was measured with the EuroQol 5-Dimension 5-Level (EQ-5D-5L) scale. Among the participants, 76.4% reported experiencing at least one symptom following COVID-19 infection. The most common symptoms were fatigue (42.1%), cognitive dysfunction (42.9%), and hair loss (27.9%). According to the DASS-21 results, the proportions of depression, anxiety, and stress were 28.7%, 26.4%, and 20.6%, respectively. The mean scores on the EQ-5D-5L and the EuroQol Visual Analog Scale were 0.94±0.11 and 84.20±13.11, respectively. Regarding QoL issues, the highest proportion of participants (32.7%) reported experiencing anxiety or depression, followed by pain or discomfort (25.4%). Multivariable logistic regression analysis revealed that factors associated with the presence of symptoms following COVID-19 infection included female (odds ratio [OR], 2.84; 95% confidence interval [CI], 1.65 to 4.91) and having QoL issues (OR, 3.25; 95% CI, 1.71 to 6.19). The study investigated the prevalence rates of various symptoms following COVID-19 infection. These findings underscore the need to prioritize comprehensive care for individuals recovering from COVID-19 and to implement strategies to mitigate the long-term impact of the disease on mental health and QoL.

Mental health and quality of life among Norwegian child welfare service workers

ABSTRACT Social workers in child welfare services play an important role in preventing crises and identifying the need for and implementing relevant measures among children and families of different ages and circumstances, often with little recognition. The main aim of this study was to examine mental health and overall- and professional quality of life of 978 Norwegian child welfare (CW) service workers. The design was cross-sectional and quantitative analyses showed that several demographic and job-related factors were associated with poorer mental health and quality of life. Approximately half of the respondents showed levels of psychological distress that warranted professional support and moderate or high levels of burnout and secondary stress (professional quality of life). Professional quality of life explained most of the variance in psychological distress and overall quality of life, respectively, after controlling for demographic and job-related variables. The findings of this study can lay the foundation for preventing mental health and quality of life issues among CW workers, as it indicates the focus areas for schools of social work in terms of the mental health of students and future CW workers.

(269) Analysis of Sexual Dysfunction Development Among Male and Female Living Kidney Donors

Abstract Introduction The need for kidney donations in patients with end-stage kidney disease has continued to exceed the number of deceased donor transplants, signifying the need for the continued growth, sustainability, and success of living kidney donation. Following donation, living kidney donors have excellent survival rates with mixed data regarding long-term outcomes of renal failure, hypertension, and proteinuria. However, no studies to our knowledge have looked at differences in the development of long-term sexual dysfunction following living kidney donation, a potentially serious quality of life issue. Objective To analyze differences in five-year sexual dysfunction outcomes among male and female living kidney donors using the US Collaborative Network within the TriNetX database, a federated network of EMR data from multiple healthcare organizations across the United States. Methods We used the TriNetX database to perform a propensity score-matched cohort study comparing five-year outcomes of sexual dysfunction development among adult (≥18) male living kidney donors (Male) and female living kidney donors (Female) from December 2013 to December 2022. Living kidney donors were defined as the presence of one diagnostic code and one procedural code. Patients were excluded from the study if they had any instance of diagnosed transplant status (by ICD-10) or transplantation procedures (by CPT) prior to the kidney donor status. Patients were matched on age, sex, race, ethnicity, marital status, diabetes mellitus, cardiovascular disease, personal history of genitourinary disease, presence of urogenital implants, mood disorders, BMI, tobacco and alcohol use, and problems related to lifestyle and socioeconomic circumstances. Primary outcomes analysis included 5-year hazard ratio of diagnosed decreased libido, sexual dysfunction (composite of new diagnosed male ED, vaginismus/dyspareunia, infertility, orgasmic disorders, arousal/desire disorders, or unspecified), UTI, and STDs. Secondary outcomes included sex counseling or problems in relationship with spouse or partner. Results There were 2,821 patients in each cohort after matching (Male, Female). Mean age of the cohort was 42.7 ± 12.7, 73.3% were White, and 10.8% were Hispanic/Latino (p >0.05). At 5-years, Kaplan-Meier analysis revealed that the Male donor cohort had a significantly higher hazard ratio (HR) than Female donors for sexual dysfunction (HR: 3.006, 95% Confidence Interval [CI]: 1.761,5.131). Between the cohorts, 39 (1%) Male patients developed ED and ~10 (<1%) Female patients developed vaginismus/dyspareunia within 5 years. No significant difference was found for the development of sexual arousal disorders/desire disorders (0.17% vs 0.06%, p = 0.052), orgasmic disorders (0.03% vs 0.03%, p = 0.99), decreased libido (0.48% vs 0.85%, p =0.94) and STD’s (0.72% vs 0.89%, p = 0.70). For secondary outcomes, no significant difference was found for the 5-year hazard of need for sex counseling or interpersonal relationship issues. Conclusions In our analysis of this large, real-world database, we found that male living kidney donors had higher rates of sexual dysfunction development 5-years post-living kidney donation. While living kidney donation is a safe, viable, and excellent alternative to deceased kidney donation, clinicians and living donors should both be aware about the potential association of developing sexual dysfunction post-donation. Disclosure No.

Quality of Life in Locally Advanced Carcinoma Rectum Patients During Various Phases of NACRT: An Indian Perspective.

In low- and middle-income countries (LMICs) including India, cancer patients have a poor prognosis because of late diagnosis and cases already grown to advanced stages, low cancer awareness and skewed cancer care facilities. In India, the incidence of colorectal cancer (CRC) is ranked the 4th most common (6.4%) in males and the 5th most common (3.4%) in females. The improvement in the cure rate of rectal cancer has increased life expectancy, and assessment of the quality of life (QoL) in these patients has become a fundamental requirement. Little is known about how the patients perceive these adverse effects during curatively intended radiotherapy. Although studies have investigated the various adverse effects that can occur with radiotherapy and chemotherapy in carcinoma rectum patients, these have not yet been critically appraised and synopsized to form a comprehensive review of their prevalence and effects on QoL. The study was designed to explore the QoL issues in locally advanced carcinoma rectum patients during various phases of neoadjuvant concurrent chemo-radiotherapy (NACCRT). The study was performed over a period of 2years at a single super speciality cancer hospital in North India. Patients were selected as per the inclusion criteria and followed up with a standard questionnaire incorporating various aspects depicting QoL. The interview technique was used for collecting QoL data at four points, at baseline, midway during treatment, at the end of treatment and 4weeks after completion of NACCRT, using EORTC QLQ C30, for QLQ CR29. Special care was taken to avoid observer bias in cases of language issues, and interpreters' services were utilised, and compared with the baseline pre-treatment scores, patients reported a statistically significant and large clinically meaningful change in the global health status, social functioning, fatigue (FACIT-F), appetite loss, anxiety, sore skin and male and female sexual function at the post-treatment time point. Statistically significant changes with moderate clinically meaningful changes were reported for the functional scales-physical, role and emotional functioning of the QLQ C30 questionnaire and body image and weight of the CR29 questionnaire. Similar moderate clinical changes were found in the symptom scales-fatigue, nausea and vomiting, insomnia, constipation and diarrhoea of QLQ C30 and stool frequency, embarrassment with bowel function, impotence and dyspareunia. These parameters returned to almost the pre-treatment values after 4weeks of completion of NACRT. Since QoL is a relatively subjective variable, differences in human race, culture, education and social environment will have impacts on the results. International cooperation is needed to study the QoL in patients with multiple cultural backgrounds. The existing QoL questionnaire tools have been designed with Western countries in mind, and we did face multiple social issues. We suggest that many similar multicentre studies shall be required to essentially tap the accurate QoL-related issues keeping in mind the diverse social, economic, racial and educational backgrounds. As we deal with the ever-increasing cancer menace and better life expectancy, QoL issues shall be a major determinant of treatment success besides primary treatment. These factors should form an integral part of treatment modality, and adequate counselling must be performed prior to initiation of care.

Patient reported outcome measures (PROMS) and patient reported experience measures (PREMS): Measuring outcomes in pelvic venous disorders

Pelvic venous disorders (PeVD) present with a range of heterogenous symptoms that arise from altered venous hemodynamics in the pelvis. Many of these symptoms lead to mental health and quality of life issues and are not limited to the pelvic region. The nutcracker phenomenon causing left renal vein compression and left ovarian venous hypertension as well as the compression of the left common iliac vein by the overlying right common iliac artery are often stated as the common underlying pathologies. As a result, there has been a sudden increase in the number of ovarian vein coil embolizations and iliac vein stents placed. In truth however, the altered venous hemodynamics in PeVD is more complex. There appears to be little correlation between the symptoms patients experience and the obvious image detected anatomical lesions being treated. In addition, these anatomical lesions are very commonly seen in asymptomatic and especially muti-parous women as well. To compare outcomes of these and other more extensive procedures being performed for these commonly seen anatomical changes in the pelvic veins, objective assessments of the outcomes as seen from the symptom relief they bring to patients treated is essential. Validated Patient-reported outcome measures (PROMS) can be an important tool to compare outcomes across interventions for PeVD. However, as the impact of similar symptoms on different patients’ quality of life (QoL) can vary, developing a validated PROM that can be used to compare procedural outcomes in PeVD is a challenge. On the other hand, complications and procedural success as reported by physician do not assess the effect on a patient’s QoL. This paper provides a narrative review of PROMs, patient reported experience measures (PREMs) and individualized-PROMs. It also suggests a process for how a validated PROM for comparing procedural outcomes in PeVD may be developed. This could provide a framework that incorporates the recently adopted Symptoms-Varices-Pathophysiology (SVP) classification of pelvic venous disorders into the PROM development process to ensure that a like-for-like comparison is made between procedures being performed on a very heterogenous, but long-suffering group of patients.

A hospital-based therapeutic food pantry study for people living with cancer in New Orleans

IntroductionFood pantries have the potential to improve health outcomes and quality of life for individuals living with cancer. Gender has been linked to certain cancer symptoms and dietary patterns. Nevertheless, the extent of research on the utilization of food pantries among this population, particularly with regard to gender differences, remains limited. The objective of this study is to explore the demographic characteristics and gender differences in quality of life, as well as the impact of cancer on the lives of individuals who utilize food pantry services.MethodsBetween February 26, 2019 and July 24, 2022, 400 people living with cancer were eligible to participate the University Medical Center New Orleans (UMC) food pantry. Participants were asked to provide demographic information and completed two health assessments related to the challenges in daily activities, nutrition, and mental health.ResultsThe study participants had a mean age of 54.1, and the majority of the participants were female. More than half of the participants did not have access to a vehicle or use public transportation to access grocery stores. People living with cancer reported several quality of life issues, with the most prevalent challenges being interference of cancer with work, lack of energy, difficulty affording food, pain, and sleep problems. Additionally, less than half of the patients reported consuming fruits and vegetables on a daily basis, and males were found to be less likely to consume them compared to females.DiscussionThe current study sheds light on the characteristics and quality of life of individuals who utilize UMC food pantry services, as well as the impact of cancer on their lives. The findings reveal a gender disparity in fruit and vegetable consumption, with male individuals living with cancer reporting lower levels of consumption.Implications for research and practiceIdentifying and addressing food insecurity among people living with cancer are necessary. Meanwhile, partnerships with community organizations may be valuable in finding ways to assist cancer survivors in returning to work. Future studies could also focus on encouraging fruit and vegetable consumption, particularly among male individuals living with cancer.

Constructing country-specific quality-of-life item banks for adults with amblyopia and strabismus in Australia and India

ABSTRACT Clinical relevance Understanding the quality-of-life (QoL) impacts of amblyopia and strabismus from the perspectives of patients using validated tools would enable eye care practitioners to provide better clinical management. Background Item banks are advanced patient reported outcome measures with several advantages over traditional QoL assessment. This paper describes the development of amblyopia and strabismus-specific QoL item banks for two distinct country settings: Australia (high-income) and India (low-middle income) and examines the unique QoL issues. Methods Using a bottom-up systematic approach, the content for the item banks was identified from three sources: existing self-report amblyopia and strabismus questionnaires (n = 22), qualitative literature (n = 5) and prospective qualitative studies in Australia (n = 49) and India (n = 30). The initial item pool underwent item evaluation, construction, and pre-testing to form optimal sets of representative items. The Indian item pools were first developed in English and translated into Hindi and Tamil using a rigorous translation protocol. The differences in QoL experiences that emanated from the qualitative studies and the number of common and unique items in the final item pools were compared. Results The final Australian and Indian item pools comprised 312 and 277 items, respectively, covering 11 QoL domains. Two hundred and sixty items (79%) were common to both countries, and 21% were unique. Of the 11 domains, except for activity limitation (64.5%), visual symptoms (73.3%) and emotional impact (75.5%) domains, all other domains had over 80% of items common to both countries. The unique items can be attributed to differences in QoL experiences, individual perspectives, culture, lifestyle, country setting and health systems. Conclusion Amblyopia has a multifaceted impact on QoL irrespective of the country settings. Despite a huge overlap in QoL impacts between Australia and India, both countries had unique issues, especially activity limitations. The study developed comprehensive, country-specific item pools for Australia and India.

Patient-generated outcomes, questions and concerns: Quantitative and open text methods and relationships with palliative care referrals in advanced ovarian cancer.

259 Background: Remotely entered patient-reported outcomes, questions and concerns in an open-text format offer opportunity for communication to providers. However, is there a benefit beyond quantitative questionnaire items? The electronic Self-Report Assessment and Care (eSAC) was implemented for patients with advanced ovarian cancer undergoing treatment in ambulatory care at a Pacific Northwest tertiary care medical center and was shown to increase rates of palliative care referrals. The purpose of this study was to analyze open text entries along with quantitative symptom and quality of life reports exploring content consistency between the two reporting methods and palliative care (PC) referrals. Methods: Adult patients with advanced or recurrent ovarian cancer were invited to participate after an in-person clinic visit and complete a baseline report. Participants were prompted to complete a report 5 days prior to every clinic visit. Following completion of web-based symptom and quality of life issues (SQI) questionnaires, participants selected the two most bothersome SQI from a list of their moderate-to-severe level (MSL) responses. Just after, the participants saw, “If there is anything else you would like to discuss, or any questions you have for your care team, please type them in the box below.” Any MSL response to pain and/or quality of life items triggered a note to the provider on the summary report, “Based on this patient’s responses, a palliative care referral is recommended.” The one-page report, including all quantitative item responses and the text entries, was hand-delivered to the provider at each clinic visit. Text entries were analyzed for consistency with the quantitative bothersome SQI and frequencies of PC referrals were calculated. Results: A total of 134 enrolled and of the 120 participants submitting at least one report, 57 (48%) reported symptoms or quality of life issues at the MSL and made 108 text entries during the study. In 26 (24%) of the text entries, participants further discussed the two most bothersome MSL, 35 (32%) addressed one MSL and 47 (44%) entries addressed completely different issues. For those who provided no text entries and triggered the PC recommendation, only 5/21 (24%) received a referral. Those who created text entries and triggered were referred in 17/33 (52%) cases. Conclusions: The inconsistency and uniqueness between quantitative and text entry approaches to assessing SQI suggest that both methods are necessary for a comprehensive patient-generated report. Communication beyond quantitative scores may prompt the consideration of a PC referral.