Health-related Quality Of Life Experiences Research Articles

Clinical and patient-reported outcomes in patients with chronic hepatitis B and C and non-alcoholic fatty liver disease from real-world practices in Saudi Arabia, Turkey and Egypt.

Patients with chronic liver disease (CLD) experience health-related quality of life (HRQoL) and patient-reported outcomes (PROs) impairments. We assessed and identified predictors of HRQoL and PROs in CLD patients from Saudi Arabia (SA), Turkey and Egypt. Patients enrolled in Global Liver Registry™ with chronic hepatitis B (CHB), chronic hepatitis C (CHC) and non-alcoholic fatty liver disease (NAFLD) or non-alcoholic steatohepatitis (NASH) were included. Clinical data and PRO questionnaires (FACIT-F, CLDQ and WPAI) were compared across countries. Linear regression identified PRO predictors. Of the 4014 included patients, 26.9% had CHB, 26.9% CHC and 46.1% NAFLD/NASH; 19.2% advanced fibrosis. Compared across countries, CHB patients were younger in Egypt (mean age [years] 41.2 ± 11.4 vs. 45.0 ± 10.3 SA, 46.1 ± 12.0 Turkey), most often employed in SA (64.8% vs. 53.2% Turkey) and had the lowest prevalence of obesity in Turkey (26.7% vs. 37.8% SA, 38.5% Egypt). In SA, CHB patients had lowest prevalence of fibrosis and comorbidities (all p < .01). There was a higher frequency of males with NAFLD/NASH in SA (70.0% vs. 49.6% Turkey, and 35.5% Egypt). Among NAFLD/NASH patients, CLDQ-NAFLD/NASH scores were highest in SA (mean total score: 5.3 ± 1.2 vs. 4.8 ± 1.2 Turkey, 4.1 ± 0.9 Egypt, p < .01). Independent predictors of worse PROs included younger age, female sex, advanced fibrosis, non-hepatic comorbidities and lack of regular exercise (all p < .05). Clinical presentation and PRO scores of CLD patients vary across SA, Turkey and Egypt. Impairment of HRQoL is associated with demographic factors, lack of regular exercise, advanced fibrosis and non-hepatic comorbidities.

Patients with neuropsychiatric involvement systemic lupus erythematosus experience poorer health-related quality of life and more fatigue than systemic lupus erythematosus patients with no neuropsychiatric involvement, irrespective of neuropsychiatric activity.

Substantial proportions of patients with systemic lupus erythematosus (SLE) report poor health-related quality of life (HRQoL). Our objective was to investigate the impact of neuropsychiatric involvement (NP) in SLE on patient-reported outcomes. We analysed data from four phase III trials (BLISS-52, BLISS-76, BLISS-SC, EMBRACE; N = 2968). The neuropsychiatric SLE (NPSLE) group comprised individuals with NP-British Isles Lupus Assessment group (BILAG) A/B/C/D or score in any descriptor of the NP-SLEDAI-2K at baseline (N = 350), while the non-NPSLE group consisted of patients with NP-BILAG E (N = 2618). HRQoL was assessed with the SF-36, EQ-5D-3L, and FACIT-F. Full health state (FHS) was defined as "no problems" in all EQ-5D dimensions. NPSLE patients reported lower scores in the SF-36 physical and mental component summary compared with the non-NPSLE population (mean±s.d.: 35.7±9.1 versus 39.6±9.6; p<0.001 and 37.3±12.1 versus 41.4±11.0; p<0.001, respectively). NPSLE patients also exhibited impaired HRQoL in all EQ-5D dimensions compared with non-NPSLE patients (p<0.05 for all). A substantially lower proportion among NPSLE patients experienced FHS in comparison with the non-NPSLE group (3.3% versus 14.5%; p<0.001). NPSLE was associated with severe fatigue (23.8±12.2 versus 31.5±11.6; p<0.001). Notably, our findings revealed no discernible distinctions between active and inactive NPSLE patients with regard to SF-36, EQ-5D, FHS, and FACIT-F scores. Neuropsychiatric involvement in patients with SLE has a detrimental effect on HRQoL experience and is associated with severe fatigue, regardless of the degree of neuropsychiatric disease activity. Early intervention is warranted in NPSLE patients to enhance long-term HRQoL experience.

Lupus Low Disease Activity State and organ damage in relation to quality of life in systemic lupus erythematosus: a cohort study with up to 11 years of follow-up.

Beyond prevention of organ damage, treatment goals in systemic lupus erythematosus (SLE) include optimisation of health-related quality of life (HRQoL). The Lupus Low Disease Activity State (LLDAS) has received increasing attention as a goal whenever remission cannot be achieved. How SLE disease activity, organ damage, and LLDAS attainment relate to patient-reported outcomes (PROs) is not fully explored, which formed the scope of this investigation. We included 327 patients with SLE from a tertiary referral centre. Longitudinal registrations of disease activity using SLEDAI-2K and physician global assessment (PhGA), organ damage using the SLICC/ACR damage index (SDI), pharmacotherapies, EQ-5D-3L data, as well as visual analogue scale (VAS) scores for fatigue, pain, and overall SLE-related health state over a median follow-up time of 8.5 years were analysed. In the overall population, as well as subgroups of patients with recent-onset SLE and those with clinically active, autoantibody-positive disease, LLDAS attainment, lower PhGA, and lower clinical SLEDAI-2K scores were associated with favourable HRQoL by EQ-5D-3L and VAS assessments, while increasing SDI scores were associated with poor PROs yet not fatigue in the overall population. PROs were further enhanced by being in LLDAS sustainedly. In fully adjusted models of the entire study population, LLDAS attainment and lower disease activity were associated with favourable PROs, irrespective of SDI. In one of the longest to date observational studies, we demonstrated that low disease activity and being sustainedly in LLDAS were coupled with favourable HRQoL, pain, fatigue, and overall health experience, irrespective of organ damage.

The Burden of Sickle Cell Disease on Children and Their Caregivers: Caregiver Reports of Children's Health-Related Quality of Life and School Experiences, Caregiver Burden, and Their Association with Frequency of Vaso-Occlusive Crises.

Children with sickle cell disease (SCD) experience a multiplex of disease-related symptoms and complications, including vaso-occlusive crises (VOCs), episodes characterized by extreme pain. A cross-sectional observational survey examined the health-related quality of life (HRQoL) and school experiences of children with SCD 2 months-11 years, burden experienced by their caregivers, and associations between these outcomes and VOC frequency. Caregivers (N=167) of children with SCD in the US completed the Infant-Toddler Quality of Life-Short Form 47 (ITQoL-SF47) for children 2 months-4 years, the Child Health Questionnaire-Parent Form 50 (CHQ-PF50) and PROMIS Pain Interference and Sleep Disturbance Parent Proxy short forms for children 5-11 years, and a study-specific survey of school experiences. Children with SCD 2 months-4 years had lower ITQoL-SF47 scores (ie, worse HRQoL, p<0.001) than a normative sample of children; across domains, differences ranged from 18.73-45.03 points and exceeded minimal important difference (MID) thresholds. Except for the behavior domain, children with SCD 5-11 years had lower scores on all CHQ-PF50 domains than the normative sample (p<0.001); differences ranged from 6.78-36.37 points and exceeded MID thresholds. Children with more frequent VOCs had lower HRQoL and worse school experiences than children with less frequent VOCs (p<0.05, except for behavior domains). The largest differences based on VOC frequency were observed for overall health and bodily pain/discomfort among children 2 months-4 years (differences=40.88 and 32.50 points, respectively), and bodily pain and role/social limitations due to physical health among children 5-11 years (differences=38.99 and 37.80, respectively). Caregivers of children with more frequent VOCs experienced greater burden than caregivers of children with less frequent VOCs, though specific areas of impact (eg, caregiver emotions, time) differed across child age groups. VOC frequency is negatively associated with HRQoL, highlighting the burden experienced by children with SCD and their caregivers.

Health-related quality of life after child maltreatment in institutions: Results from a representative population-based sample in Germany

BackgroundChild maltreatment (CM) is a major public health problem associated with enormous consequences, including impaired health-related quality of life (HRQOL). While the consequences of CM that occurs in the family context have been studied numerous times, studies on the consequences of institutional CM are lacking. This is of particular importance because cases of CM in churches, sport clubs and school, educational and medical settings have become increasingly apparent in Germany. ObjectiveThus, the objective of this study was to assess the association of CM in various institutions with HRQOL in adulthood. Participants and settingIn a cross-sectional observational approach, a representative sample of the German population (N = 2516) was identified via a random-route. MethodsSocioeconomic information, HRQOL and CM experiences in school, medical and educational institutions were obtained and statistically evaluated. ResultsOf the 2516 participants, 834 (33.14 %) reported CM in institutions and 1194 (47.46 %) reported impaired HRQOL. Participants who reported CM in institutions were more likely to have HRQOL impairments than participants who had been in the respective institution in childhood but had not reported having experienced CM there. In the case of CM in medical institutions, HRQOL impairments increased 2.2–3.9-fold. If CM in school was reported, HRQOL impairments increased 1.6–2.0-fold. If CM in educational institutions was reported, HRQOL impairments increased 2.1–2.7-fold. ConclusionsCM in institutions is associated with an increased likelihood of HRQOL impairments in Germany. Institutions need to be aware of the risk of CM and safeguarding measures should be implemented.

Patient quality of life and caregiver experiences in ovarian cancer: How are they related?

Patients with ovarian cancer and their spousal caregivers report similarities in health-related quality of life (HRQoL) and experiences throughout the cancer process. Previous research has reflected these shared experiences, demonstrating caregivers' capacity to accurately rate their patient-partner's HRQoL as a proxy. In response, this study examines associations between caregivers' perceptions of their patient-partner's HRQoL and their own caregiving responsibilities, consequences to well-being, and desired assistance from the healthcare system. This study will be beneficial when developing supports to assist caregivers throughout the cancer journey. Using a cross-sectional survey design, spousal caregivers (N = 82) of patients with ovarian cancer completed measures on perceived patient HRQoL and caregiver experiences. Correlation analyses determined medical and sociodemographic covariates. A multivariate multiple regression was conducted using four proxy HRQoL functioning subscales and three factors of reported experiences as caregivers in cancer. Post-hoc univariate regression analyses were run on significant factors to assess the associations that exist. Caregiver-perceived patient physical functioning was significantly associated with more caregiving tasks after controlling for education, age, and stage of ovarian cancer, but no other HRQoL functioning scale (i.e., role, emotional, social) was associated with caregiver experiences. The study provides a unique perspective into the caregiver experience by attending to interpersonal factors in relation to caregiver experiences. Results may be able to guide interventions aimed at supporting caregivers through the cancer process by offering more assistance with tasks as their partner's physical condition worsens.

Health-related quality of life by race, ethnicity, and country of origin among cancer survivors.

Typical cancer research studies of health-related quality of life (HRQOL) in the United States do not include country of origin when examining race and ethnic group differences. This population-based, cross-sectional study used an innovative methodology to examine how self-reported racial and ethnic groups, by country of origin, report differential HRQOL experiences after adjusting for clinical and demographic characteristics, including socioeconomic status. Recruited from 4 cancer registries in California, Louisiana, and New Jersey, cancer survivors completed Patient-Reported Outcomes Measurement Information System measures of fatigue, pain interference, anxiety, depression, sleep disturbance, physical function, ability to participate in social roles, and cognitive function. Latent profile analysis clustered survivors in HRQOL clusters based on including all the Patient-Reported Outcomes Measurement Information System domains. The 5366 participants (60% female; 40% male; average age of 59.8 years) included 17% Asian, 18% Black, 21% Hispanic, and 41% White survivors. Survivors were grouped into 4 clusters: high HRQOL (26%), average HRQOL (34%), low HRQOL (29%), and very low HRQOL (11%). Among many differences by race, ethnicity, and country of origin, Caribbean cancer survivors were more likely to be in the very low HRQOL cluster (odds ratio = 2.67, 95% confidence interval = 1.31 to 5.43) compared with non-Hispanic White survivors. Similarly, American Indian and Alaska Native, Cuban, Dominican, and Puerto Rican cancer survivors had relatively high percentages in the very low HRQOL cluster. This study found statistically significant differences in HRQOL experience by race, ethnicity, and country of origin, even after adjusting for social determinants of health. These findings inform future HRQOL research to include these self-reported factors.

PMON336 Pfizer Registry of Outcomes in Growth hormone RESearch (PROGRES): A multi-country, non-interventional, prospective, cohort study of patients receiving human growth hormone treatments under routine clinical care

Abstract Background Children with growth hormone deficiency (GHD) are treated with recombinant human growth hormone (rhGH), usually administered as a daily subcutaneous injection. Long-acting hGH (LAGH) treatments (approved and in development) have the potential to improve adherence and treatment outcomes. Somatrogon is a LAGH currently being developed as a once-weekly injectable treatment for GHD. The Pfizer Registry of Outcomes in Growth hormone RESearch (PROGRES) study was initiated to assess the long-term safety and effectiveness of Genotropin and other hGH formulations to treat GHD under routine clinical care. Goals &amp; aims: The overall goal of the registry is to increase our understanding of hGH treatments as used in a real-world setting. Enrolling children treated with different daily hGH brands as well as somatrogon (if approved in a given geography) will enable comparison between daily and LAGH, and across daily hGH brands. The primary objectives of the study are to describe and compare the safety and effectiveness of daily and LAGH treatments in children. Secondary objectives include evaluating adherence to hGH treatments and the health-related quality of life (HRQoL) and treatment experience of patients receiving hGH treatments. Methods For this non-interventional, prospective, phase 4 cohort study, eligible patients (male or female at any age) from &amp;gt;20 countries are planned for inclusion, with the aim of targeting 667 patients across the daily hGH brands in each of the three geographic regions. Patients will be enrolled from September 2021 to October 2029, with data collection planned until October 2030. Study inclusion criteria include prescription of daily Genotropin or other approved hGH treatments for GHD and the provision of informed consent/assent. If somatrogon is approved by regulatory agencies, somatrogon-treated patients will also be eligible for inclusion. Patients participating in any interventional clinical trials at the time of enrollment will be excluded from the study. Patients will be followed until the end of the study, withdrawal of consent, death, switch to an excluded hGH, or loss to follow-up, whichever occurs first. In addition to demographic and clinical characteristics, information on hGH treatment brand, dose and start/end dates will be collected, along with reasons for switching or discontinuing treatment. Primary safety outcomes include adverse events (AEs), serious AEs, and AEs of special interest. Primary effectiveness outcomes include annual height velocity (HV) and change in HV standard deviation scores. Treatment adherence, compliance outcomes, HRQoL, and patient treatment experience will be assessed. Conclusions The findings from the PROGRES study will provide valuable insights into the use of somatrogon, Genotropin and other approved hGH treatments in real-world clinical practice, specifically with regard to the long-term safety and effectiveness of these treatments as well as treatment compliance and patient HRQoL. Presentation: Monday, June 13, 2022 12:30 p.m. - 2:30 p.m.

Associations between health-related quality of life and measures of adiposity among Filipino adults.

ObjectiveEstimate associations between the health-related quality of life (HRQoL) and adiposity in a low-income population.MethodsIn a cluster random sample of 3796 Filipinos aged 40–70 years in Nueva Ecija province, we measured body mass index (BMI), waist circumference (WC), waist-to-hip ratio (WHR), and six dimensions of HRQoL using the 20-item Short Form Health Survey. We stratified by sex and used nonparametric regression to graph mean HRQoL in each dimension by BMI, WC, and WHR. We used ordinary least squares regression to estimate differences in each HRQoL dimension by categories of BMI, WC, and WHR adjusted for sociodemographic characteristics and smoking.ResultsMean HRQoL was lowest for health perception (Males: 67.5 (SD = 15.9); Females: 66.7 (15.8)) and highest for role functioning (Males: 97.5 (12.9); Females: 97.4 (13.3)). Mean (SD) values of BMI, WC, and WHR were 22.1 (3.6), 84.8 cm (9.5), and 0.9 (0.1), respectively for males, and 23.7 (4.2), 86.5 cm (10.2), and 0.9 (0.1), respectively, for females. There was no evidence that higher BMI was associated with lower HRQoL. Adjusted mean social functioning was 4.92 (p = 0.076) higher for males with high BMI risk (8.6% prevalence) compared with acceptable BMI risk (50.3%). Mean social functioning was 3.61 (p = 0.012) and 5.48 (p = 0.017) lower for females with high WC (44.7%) and WHR (83.1%), respectively, compared with those with low WC (23.8%) and WHR (3.6%). Mean physical functioning was lower by 2.70 (p = 0.204) and 1.07 (p = 0.198) for males and females, respectively, with high compared with low WC. Mean physical functioning was 3.93 (p = 0.037) lower for males with high (7.6%) compared with low (38.8%) WHR. Mean role functioning was 1.09 (p = 0.124) and 2.46 (p = 0.158) lower for males with borderline and high WHR, respectively.ConclusionsThere is discordance between future adiposity-related health risk and current experience of HRQoL.

A comprehensive qualitative framework for health-related quality of life in Duchenne muscular dystrophy

PurposeDuchenne muscular dystrophy (DMD) is a rare x-linked neuromuscular condition predominantly affecting boys and men. There is a paucity of research qualitatively detailing the lived experience of health-related quality of life (HRQoL) for people with DMD. The aim of this study was to identify a comprehensive framework for better understanding HRQoL in DMD.MethodsEighteen boys and men (aged 7 to ≥ 40 years) with DMD were recruited from charity Duchenne UK, a DMD support group, and 5 UK National Health Service Trusts. Semi-structured interviews were conducted using a topic guide informed by a review into HRQoL in DMD. Generic, preference-based, patient-reported outcome measures (PROs) were used as prompts. Interviews were audio recorded, transcribed verbatim and analysed using framework analysis.ResultsThirty-seven themes were coded, within seven categories. Six categories were conceptualised as components of HRQoL (autonomy, daily activities, feelings and emotions, identity, physical aspects, social relationships) and one considered an input (healthcare, support, and environment). Three additional themes were used to code feedback on the generic PROs (CHU-9D, EQ-5D, HUI). Social relationships received most coverage in the data and was noted as an omission from the PROs.ConclusionA 30-item framework for HRQoL in DMD has been developed, which was used as input into a new condition-specific HRQoL PRO and preference-based measure: the DMD-QoL. The data has value in its own right in highlighting the lived experience of HRQoL for people with DMD and as a barometer for assessing the content of HRQoL PROs for use in DMD.

Quality of Life Outcomes and Associated Symptoms Reported by Lung Transplant Recipients Amidst COVID-19 Pandemic: Applying a Novel Assessment Tool

BackgroundThere are 2 main aims of lung transplantation for people with end-stage lung disease: (1) to extend life and (2) to improve its quality. Much consideration is given to how to support the longevity and functioning of the allograft, though less robust studies have been done on the quality of the recipients’ lives. With an interest in providing compassionate and holistic patient-centered care, it is vital that the treatment providers accurately understand their patients’ lived experience. This study aimed to describe the health-related quality of life experiences of lung transplant recipients. An interest was held for where patients may struggle, thus informing where support might be needed to achieve the best possible outcomes.MethodsThis single-center study used a validated Lung Transplant Quality of Life questionnaire, which was sent in autumn of 2020 to all of the lung transplant recipients (n = 581) under the care of Columbia University Irving Medical Center (New York, NY).Results“Anxiety/Depression” had the highest concentration of struggle responses, followed closely by “Pulmonary Symptoms” and “Neuromuscular Symptoms.” “Neuromuscular Problems” and “Sexual Problems” had the highest percentage of struggle responses. As the struggles increased, the overall quality of life rating dropped proportionately. There was no correlation between the overall quality of life and graft dysfunction, age, or time out from transplant date. All of the domains held an average rating of "Satisfactory,” except “Treatment Burden,” which was rated as “Favorable.” Those ratings dropped for the cohort of patients who died during the study period.ConclusionsWith the goal of providing comprehensive care at the forefront of transplant priorities, we found the newly developed questionnaire invaluable in targeting areas for quality improvements, mostly notably respecting recipient mental health.

“A fog that impacts everything”: a qualitative study of health-related quality of life in people living with HIV who have cognitive impairment

BackgroundCognitive impairment (CI) in people living with HIV (PLWH) is an important health concern in the context of an ageing HIV population. Impacting 14–28% of PLWH, CI is associated with lower health-related quality of life (HRQoL), however, evaluation of the illness-specific factors comprising HRQoL in PLWH with CI have not been assessed.ObjectiveWe sought to contribute evidence toward an understanding of HRQoL and identify domains of HRQoL in PLWH with CI.MethodsQualitative interviews with 25 PLWH with objective CI related to HIV disease were conducted with participants attending HIV clinics in the UK. Clinically significant CI was defined based on The European AIDS Clinical Society guidelines, requiring: (i) subjective reporting of cognitive symptoms; (ii) symptoms to be related to HIV (e.g. potentially confounding non-HIV related conditions have been excluded or are being optimally managed) and; (iii) formal neuropsychological assessment confirming CI. Median age was 56 years (range 35–80); 18 participants were men (72%); 11 (44%) were white British and 8 (32%) were Black African; 14 (56%) were men that have sex with men and 10 (40%) were heterosexual; median number of years living with HIV was 17 (range 1–34); and all participants were on combination antiretroviral therapy. Analyses employed techniques from grounded theory, underpinned by an inductive, collaborative team-based approach.ResultsFindings revealed seven interrelated domains comprising HRQoL experiences were identified: Physical function, Cognition, Social connectedness, Physical and mental health, Stigma, Self-concept, and Control and acceptance, and each was defined by specific descriptive components.ConclusionThis study provides valuable insights on the factors that drive HRQoL in PLWH with CI and contribute to a body of evidence which provides targets for the development of targeted interventions to maintain or improve quality of life.

Acupuncture for Quality of Life in Gastric Cancer Patients Undergoing Adjuvant Chemotherapy

ContextPatients with gastric cancer experience health-related quality of life (HRQOL) decline during adjuvant chemotherapy following gastrectomy. ObjectivesThis pilot study aimed to evaluate the preliminary effect and feasibility of electro-acupuncture (EA) for HRQOL and symptom burden in these patients. MethodsIn this open-label, multicenter, parallel controlled trial, gastric cancer patients who planned to receive adjuvant chemotherapy were randomly assigned to receive high-dose EA (seven times each chemotherapy cycle for three cycles), low-dose EA (three times each chemotherapy cycle), or usual care only. The acupoints prescription consisted of bilateral ST36, PC6, SP4, and DU20, EX-HN3, and selected Back-shu points. Patients completed the Functional Assessment of Cancer Therapy-Gastric (FACT-Ga) weekly, and the Edmonton Symptom Assessment System (ESAS). The primary outcome was the difference among the groups on the gastric cancer subscale (GaCS) of the FACT-Ga. ResultsOf the 66 randomized patients, 58 were analyzed according to intention-to-treat principle, and 45 were in the per-protocol set (PPS). The average scores in PPS of GaCS were 52.12±9.71, 51.85±12.36, and 45.37±8.61 in high-dose EA, low-dose EA, and control groups, respectively. EA was significantly associated with improved average GaCS scores when compared with control group (51.98±10.91 vs. 45.37±8.61, P = 0.039). EA treatment also produced ESAS relief at the end of intervention (14.36 ± 12.28 vs. 23.91 ± 15.52, P = 0.027). Participants in EA groups had fewer grade ≥3 leukopenia (0% vs. 15.79%, P = 0.031) and neutropenia (2.56% vs. 26.31%, P = 0.012). ConclusionEA showed promising effects in improving HRQOL, controlling symptom burden, and reducing toxicity during adjuvant chemotherapy in gastric cancer patients. Future adequately powered trials are feasible and needed to confirm the specific effect of EA.

Cancer Survivors’ Experience of Health-Related Quality of Life Six to Eight Years after Diagnosis—A Qualitative Study

Background: Health-related quality of life (HRQOL) is affected for many years following cancer treatment. With an increasing number of long-term cancer survivors, HRQOL will be a key concern in the future. There is a lack of qualitative studies investigating long-term cancer survivors’ needs and experience of late effects and HRQOL. Objective: The aim of this sub-study is to describe cancer survivors’ own experience of late effects affecting HRQOL six to eight years after diagnosis. Methods: We used a qualitative methodology with semi-structured focus group interviews to gain an in-depth understanding of participants’ experience of their HRQOL. Interviews were audio-recorded, transcribed and analyzed using thematic analysis. Results: All of the participants reported late effects at some point after the treatment. Some of the experienced late effects had improved over the years, while the late effects mentioned in this article were still prominent six to eight years after the diagnosis. They described, among others, late effects such as reduced physical strength, cognitive difficulties, lack of energy and increased sensitivity. The participants described the late effects as bearable, but still affecting their HRQOL by limiting their activity level, their ability to work and their social interactions. Conclusions: Six to eight years post-treatment, cancer survivors still experienced physical and cognitive late effects affecting their HRQOL. The findings indicate that some late effects affect HRQOL for a long time. To prepare cancer survivors for post-treatment life and to optimize their HRQOL, they need information concerning potential late effects before, during and after cancer treatment, as well as support services and follow-up in the municipalities.

QOL-26. I’VE GOT FRIENDS NOW: PAEDIATRIC PATIENTS’ EXPERIENCES OF METHYLPHENIDATE TREATMENT FOR NEUROCOGNITIVE LATE-EFFECTS ASSOCIATED WITH BRAIN TUMOUR

BACKGROUNDWhilst rates of survival following paediatric brain tumour have increased, quality of survival continues to present a significant challenge to children and their families. The neurocognitive impact of cranial radiotherapy (CRT) in childhood upon future intellectual development is well established. Both CRT and chemotherapy are associated with medium-term slowed speed of cognitive processing, attention, and memory impairment, and with longer-term failure to achieve pre-morbid intellectual potential and low Health-Related Quality of Life (HRQoL).Methylphenidate is a psychostimulant drug shown to be effective in alleviating some of the neurocognitive symptoms of cancer treatment, however the subjective experience of paediatric participants is not reported. AIM: The current study aimed to explore the subjective experience of HRQoL in paediatric neuro-oncology patients currently receiving methylphenidate.METHODSA retrospective audit was conducted on 12 paediatric neuro-oncology patients in receipt of methylphenidate. Both standardised and novel measures were used to assess aspects of HRQoL, specifically; social life, perceived independence, mood, confidence, school life, self-esteem, interpersonal relationships and fatigue levels. Data collected were analysed using Thematic Analysis.RESULTSFive key themes were identified; physical, emotional, social, academic and neuropsychological impact.CONCLUSIONThe current findings evidence the perception of patients that methylphenidate supported them to regain previously lost functionality. Methylphenidate has the potential to increase HRQoL in this population and to provide children with the opportunity to regain a sense of normality in their lives.

Patient Expectations and Perceptions of Treatment in CARTITUDE-1: Phase 1b/2 Study of Ciltacabtagene Autoleucel in Relapsed/Refractory Multiple Myeloma

Patient Expectations and Perceptions of Treatment in CARTITUDE-1: Phase 1b/2 Study of Ciltacabtagene Autoleucel in Relapsed/Refractory Multiple Myeloma

The experience of health-related quality of life in extended and permanent cancer survivors: A qualitative systematic review.

This qualitative systematic review aims to synthesize qualitative evidence from primary studies on experiencing health-related quality of life (HRQoL) in extended and permanent cancer survivors. A systematic literature search was performed in PubMed, CINAHL, LILACS, PsycINFO, Scopus, and Web of Science. It followed guidelines from the statement in the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ). A quality appraisal of each study was undertaken using the Critical Appraisal Skills Programme. Data synthesis was conducted according to the thematic synthesis approach. Confidence in each review finding was assessed using the Confidence in the Evidence from Reviews of Qualitative research (Grade-CERQual). Twenty-four studies from nine countries were selected for the final sample. Analysis of the studies' results allowed for the construction of nine descriptive themes that were interpreted into three analytical themes: "The body as a representation of HRQoL," "Living through and beyond cancer: the re-signification of HRQoL," and "Employing resources to improve HRQoL." According to the CERQual approach, moderate confidence estimations were achieved for the results. The themes reflect that the HRQoL experience is re-signified by survivors from the privilege of being alive. This process happens with the support of social resources, family, hope, and spirituality. Based on the findings, it is suggested that health staff should be able to recognize the impact that cancer survival has on HRQoL and develop a care plan that addresses needs to sustain health in these survivors.

Assessing the Desmoid-Type Fibromatosis Patients' Voice: Comparison of Health-Related Quality of Life Experiences from Patients of Two Countries.

Purpose Desmoid-type fibromatosis (DTF) is a rare, nonmetastasising soft tissue tumour. Symptoms, unpredictable growth, lack of definitive treatments, and the chronic character of the disease can significantly impact health-related quality of life (HRQoL). We aimed at identifying the most important HRQoL issues according to DTF patients in two countries, in order to devise a specific HRQoL questionnaire for this patient group. Methods DTF patients and healthcare providers (HCPs) from the Netherlands and the United Kingdom individually ranked 124 issues regarding diagnosis, treatment, follow-up, recurrence, living with DTF, healthcare, and supportive care experiences, according to their relevance. Descriptive statistics were used to calculate priority scores. Results The most highly ranked issues by patients (n = 29) were issues concerning “tumour growth,” “feeling that there is something in the body that does not belong there,” and “fear of tumour growth into adjacent tissues or organs” with mean (M) scores of 3.0, 2.9, and 2.8, respectively (Likert scale 1–4). British patients scored higher on most issues compared to Dutch patients (M 2.2 vs. M 1.5). HCPs (n = 31) gave higher scores on most issues compared to patients (M 2.3 vs. M 1.8). Conclusion This study identified the most relevant issues for DTF patients, which should be included in a DTF-specific HRQoL questionnaire. Additionally, we identified differences in priority scores between British and Dutch participating patients. Field testing in a large, international cohort is needed to confirm these findings and to devise a comprehensive and specific HRQoL questionnaire for DTF patients.

Family Caregivers of Children With Medical Complexity: Health-Related Quality of Life and Experiences of Care Coordination.

To examine the association between care coordination experiences of family caregivers of children with medical complexity (CMC) and caregivers' health-related quality of life (HR-QOL). From July 2018 to July 2019, family caregivers of CMC completed an electronic survey (n=136) at the time of initial contact with a regional complex care medical home. Information on caregiver HR-QOL and receipt of care coordination services were assessed using the Center for Disease Control's HR-QOL-14 measure and Family Experiences of Care Coordination questionnaire, respectively. Negative binomial regression, adjusted for caregiver and child characteristics, examined associations between caregiver HR-QOL and caregiver experiences of care coordination. In the 30 days prior to initial contact, CMC caregivers reported a median of 3.5 mentally unhealthy days, 2 days felt depressed, 7 days felt anxious, and 16 days with insufficient sleep. Caregivers who had a knowledgeable, supportive care coordinator who advocates for their child reported significantly fewer days mentally unhealthy (incidence rate ratio [IRR], 0.46; 95% confidence interval [CI], 0.22-0.95), depressed (IRR, 0.44; 95% CI, 0.21-0.91), or anxious (IRR, 0.5; 95% CI, 0.29-0.85). Having a shared care plan was associated with significantly fewer days mentally unhealthy (IRR, 0.46; 95% CI, 0.23-0.93) or anxious (IRR, 0.53; 95% CI, 0.31-0.92). Having a written visit summary with appropriate content was associated with fewer days of insufficient sleep (IRR, 0.63; 95% CI, 0.43-0.93). CMC family caregivers report experiencing mentally unhealthy days and negative mental symptom days. The experience of specific care coordination activities was associated with higher caregiver mental HR-QOL.

Health-related quality of life in adolescents with persistent pain and the mediating role of self-efficacy: a cross-sectional study

BackgroundPersistent pain has a high prevalence among adolescents. Pain has been shown to reduce all aspects of the adolescent’s health-related quality of life (HRQOL). In adult patients with pain, self-efficacy has been shown to mediate the relationship between pain intensity, disability and depression. However, little is known about whether self-efficacy acts as a mediating variable in the relationship between persistent pain and HRQOL sub-scale scores in a school-based population of adolescents.ObjectivesTo describe the experience of pain, HRQOL and self-efficacy, and to explore the association between pain intensity, general self-efficacy and HRQOL in adolescents with persistent pain by testing self-efficacy as a possible mediator.MethodsThe study participants were 78 adolescents with persistent pain, aged 16–19 years, who were recruited from five high schools in southern Norway. All participants completed an electronic survey consisting of the Lubeck Pain Questionnaire, which included a visual analogue scale (VAS) measuring pain intensity, the General Self-Efficacy Scale (GSE) and the KIDSCREEN-52 Questionnaire measuring HRQOL. Statistical analyses were conducted using the PROCESS macro for SPSS developed by Andrew Hayes.ResultsAll participants reported pain in multiple locations, of which the head was most common (88.5%). Mean (SD) pain intensity score of the participants was 5.4 (1.8). The study sample had poor HRQOL, with mean (SD) scores for several sub-scales ranging from 45.2 (21.0) to 91.0 (13.3) on a 0–100 scale. The associations between pain intensity and the HRQOL sub-scales of physical well-being, psychological well-being, mood, self-perception, autonomy and school environment were mediated by self-efficacy. The highest degree of mediation and, thus, the largest indirect effect was estimated for the HRQOL sub-scale physical well-being (67.2%).ConclusionsThis school-based sample of adolescents with persistent pain had impaired HRQOL. Up to 67% of the reduction in the HRQOL sub-scale scores for physical well-being, psychological well-being, mood, self-perception, autonomy and school environment could be explained by the mediating variable self-efficacy. Thus, future pain-management interventions that aim to increase HRQOL in school-based populations of adolescents with persistent pain should consider promoting self-efficacy and providing more targeted interventions.Trial registrationClinicalTrials.gov ID NCT03551977.