Health-related Quality Of Life Issues Research Articles

Determining what matters most to Marfan syndrome (MFS) patients: a convergent mixed method study of the health-related quality of life and psychosocial effects of MFS aortovascular manifestations

Abstract Background Marfan Syndrome (MFS) affects multiple organ systems but the aortovascular manifestations are the most serious and life-threatening. However, there is no available evidence on the effect of the aortovascular manifestations on health-related quality of life (HRQoL) and psychosocial wellbeing of MFS patients. Purpose This study aims to determine the HRQoL and the psychosocial effects of the aortovascular manifestation of MFS. Methods A convergent mixed-method design was used in this single site study. Specifically, the quantitative study (S1) is an observational exploratory study using seven validated questionnaires relating to HRQoL (SF36, EQ-5D-5L) and psychosocial health (depression [CESD], illness perception [IPQ], fatigue [FSS], self-esteem [RSES], stigma [PSQ]), previously used in MFS research. The qualitative study (S2) is an exploratory study using semi-structured interviews. Analysis consisted of descriptive and inferential statistics and Framework method1 for S1 and S2, respectively. Joint display was used for data integration. Results A total of 75 participants completed the questionnaires (S1) and 20 were interviewed (S2). The mean age was 43 years (S1) and 40 years (S2) and the majority (S1: 54 (72%); S2: 17 (85%)) were white British. S1 found the majority of MFS participants experienced depression, anxiety, pain and fatigue. These areas were confirmed in S2. A positive self-esteem was generally reported in S1, but this is not supported by S2, which highlighted patients experience a loss of self-esteem due to perceived body image disturbance. Finally, S2 generated new areas not identified in S1 including health anxiety, loss of personal efficacy, self-stigma and ‘invisible disability’ affecting work and socio-economic condition. Overall, the joint display generated three confirmed, seven expanded and one discordant finding. Conclusion MFS patients with aortovascular manifestations experienced several HRQoL and psychosocial issues related to their condition. Collaborative efforts are needed to develop multifaceted interventions and programs to address their needs and provide a holistic and comprehensive service for MFS patients. Finally, four new areas were identified in S2, which added important new evidence in this body of knowledge.

Linguistic, Content and Face Validity of the Swedish Version of a Quality-of-Life Assessment for Children, Teenagers and Adults with Spina Bifida.

Spina bifida includes a spectrum of different neural tube defects. Myelomeningocele is the most serious type and is associated with a risk of paralysis and sensory dysfunction below the affected level, bladder/bowel dysfunction, brain dysmorphology, and impaired health-related quality of life (HRQoL). The aim of this study was to describe the establishment of linguistic, content and face validity of the Swedish version of a Quality-of-Life Assessment for children (QUALAS-C, n = 10 items), teenagers (QUALAS-T, n = 10 items) and adults with spina bifida (QUALAS-A, n = 15 items) based on the original US English versions. The process included close collaboration with the original instrument developer and complied with international standards on patient-reported outcome measurements. The procedure includes forward translation, expert and patient/parent review and reconciliation, back translation, back translation review and cognitive debriefing interviews with 16 people with spina bifida aged 8 to 33, providing them with the possibility of evaluating the clarity, adequacy, and comprehensiveness of QUALAS-C, QUALAS-T and QUALAS-A, respectively. The interviews lasted a median of 15 min (range 8-16) for QUALAS-C, 10 min (range 9-15) for QUALAS-T and 24 min (range 9-38) for QUALAS-A. Four main issues/topics needed attention and discussion after both the forward and back translation. Following the back translation review, all issues were resolved. The patient feedback revealed recognition of the HRQoL issues included in QUALAS, and also difficulties in understanding some questions. After the patients' evaluation, four items were reworded for clarity. No study participant reported a wish to add to or remove questions from QUALAS. Hence, the Swedish versions of QUALAS became conceptually equivalent to the original US English versions and achieved linguistic, content and face validity. While empowering the voices of people with spina bifida, these results also enable their HRQoL to be properly assessed in research and clinical care in Sweden and in international studies.

Revisiting the use of the EORTC QLQ-STO22 to assess health-related quality of life of patients with gastric cancer: incorporating updated treatment options and cross-cultural perspectives

BackgroundThe EORTC QLQ-STO22 (QLQ-STO22) is a firmly established and validated measure of health-related quality of life (HRQoL) for people with gastric cancer (GC), developed over two decades ago. Since then there have been dramatic changes in treatment options for GC. Also, East Asian patients were not involved in the development of QLQ-STO22, where GC is most prevalent and the QLQ-STO22 is widely used. A review with appropriate updating of the measure was planned. This study aims to capture HRQoL issues associated with new treatments and the perspectives of patients and health care professionals (HCPs) from different cultural backgrounds, including East Asia.MethodsA systematic literature review and open-ended interviews were preformed to identify potential new HRQoL issues relating to GC. This was followed by structured interviews where HCPs and patients reviewed the QLQ-STO22 alongside new issues regarding relevance, importance, and acceptability.ResultsThe review of 267 publications and interviews with 104 patients and 18 HCPs (48 and 9 from East Asia, respectively) generated a list of 58 new issues. Three of these relating to eating small amounts, flatulence, and neuropathy were recommended for inclusion in an updated version of the QLQ-STO22 and covered by five additional questions.ConclusionsThis study supports the content validity of the QLQ-STO22, suggesting its continued relevance to patients with GC, including those from East Asia. The updated version with additional questions and linguistic changes will enhance its specificity, but further testing is required.

What matters most to people with metastatic uveal melanoma? A qualitative study to inform future measurement of health-related quality of life.

Metastatic uveal melanoma (mUM) is a rare cancer with poor prognosis, but novel treatments are emerging. Currently, there are no mUM-specific health-related quality of life (HRQL) questionnaires available for clinical research. We aimed to explore how mUM and its treatment affect HRQL and assess the content validity of existing questionnaires. Participants were patients with mUM and healthcare professionals involved in their care. Qualitative data were collected using semi-structured interviews and focus groups. Data collection and analysis used an integrative approach involving inductive questions/coding to elicit new concepts and deductive questions/coding based on domains of existing HRQL questionnaires. Initial interviews/focus groups focussed on HRQL questionnaires designed for patients with uveal melanoma or liver metastases. As new concepts were elicited, domains and items from other questionnaires were subsequently added. Seventeen patients and 16 clinicians participated. HRQL concerns assessed by uveal melanoma-specific questionnaires were largely resolved by the time of metastasis. The Functional Assessment of Cancer Therapy - Immunotherapy Module (FACT-ICM) adequately captured most immunotherapy-related side effects during initial treatment cycles. However, most patients emphasised emotional impacts over physical ones, focussing on the existential threat posed by disease amidst uncertainty about treatment accessibility and effectiveness. Patients were also concerned with treatment burden, including time commitment, travel, need for hospitalisation, and expenses. The relative importance of HRQL issues varied over time and across treatment modalities, with no single questionnaire being sufficient. Pending further development and psychometric testing, clinical researchers may need to take a modular approach to measuring the HRQL impacts of mUM.

Measuring health-related quality of life in solid rare cancer patients: A study protocol

Rare cancer patients often face delayed diagnosis and lack of expert care which are a challenge to clinical practice. Patients diagnosed with a rare tumour report poorer psychosocial outcomes and impaired health-related quality of life (HRQoL). The impairment might be explained by the challenges patients with rare cancer face during their disease trajectory. Specific HRQoL assessment is important to understand the variances in the quality of life patients experience. This study aims to examine how HRQoL is currently assessed in clinical adult solid rare cancer research and identify specific HRQoL issues patients experience and issues faced in the healthcare system due to the disease’s rarity. Further, this study aims to test the content validity of existing HRQoL questionnaires. In this mixed-method research, two literature reviews will be conducted, and clinical data will be collected worldwide in a multicentre approach via interviews and questionnaires. Basic quantitative analysis will be used to analyse patient and HCP data. The project outcomes will result in standards of the HRQoL measurement in patients diagnosed with a solid rare cancer.

The HAIR-QoL measure Part 1: What are the quality of life issues for people with cancer with chemotherapy-induced alopecia?

This paper describes the development of the provisional HAIR-QoL questionnaire on the impact of chemotherapy-induced alopecia on health-related quality of life. A total of 43 items have been developed. IntroductionChemotherapy Induced Alopecia (CIA) is the most visible side effect of chemotherapy treatment, carrying an important psychosocial burden, and negatively affecting health-related quality of life (HRQoL). No internationally validated instrument for the severity and impact of CIA exists for people with cancer for both sexes, which has hindered research in this area. Therefore, our aim was to develop a patient-reported measure for use in research and patient care. MethodsWe established a list of potential issues based on experiences of patients and healthcare professionals (HCPs) through a literature review, interviews, and focus groups with 52 patients in various cancer centres from three countries. Thereafter, a total of 51 eligible patients and 11 HCPs from four countries scored these issues on relevance and priority before translating into items for the provisional HAIR-QoL questionnaire. ResultsThe literature search identified 293 issues, and focus groups and interviews another 618 issues. Removing duplicates and general HRQoL issues resulted in 95 pertinent issues across 6 health-related QoL domains: (1) meaning and importance of hair, (2) satisfaction with the received information regarding hair loss and preparedness, (3) impact of hair loss on self, (4) impact of hair loss on others, (5) management of changes/side effects, and (6) regrowth of hair. Differences in relevance scores could be detected between males and females, and were associated with 5 items on the wearing of a wig/head cover (Z = 2.9–3.4, p between 0.001 and 0.004). Also relevance scores for ‘wearing a wig/head cover for my partner/children’ were higher for female patients with breast cancer compared to other cancers (Z = 3.2, p = 0.001). The calculated scores on relevance and priority led to a total of 43 issues that have been translated into items. ConclusionThis study shows that people with cancer with CIA experience important HRQoL issues, not adequately measured by existing HRQoL measures. CIA can affect male people with cancer as much as it can affect females. The provisional HAIR-QoL questionnaire provides an optimal approach for multidisciplinary teams who care for people with cancer in understanding their patients’ concerns and priorities around CIA.

Health-related quality of life of Adolescent and Young Adult Cancer Survivors before and during the COVID-19 pandemic: longitudinal improvements on social functioning and fatigue

The health-related quality of life (HRQoL) among long-term Adolescent and Young Adult Cancer Survivors (AYACS) and an age- and sex-matched normative population was examined. Although the HRQoL of AYACS was worse compared to the normative population before and during the COVID-19 pandemic, the scores of AYACS improved over time in contrast to the normative population. Presumably, AYACS are used to adjusting their lives to stressful life events. Furthermore, the lockdown may have been beneficial for AYACS who face difficulties fully participating in society due to the impact of cancer. AYACS who encounter HRQoL issues could benefit from support interventions to empower them and build resilience.

Mepitel film for the prevention and treatment of acute radiation dermatitis in breast cancer: a systematic review and meta-analysis of randomized controlled trials.

This systematic review and meta-analysis aimed to evaluate the efficacy of Mepitel film in preventing or treating acute radiation dermatitis (RD) in patients with breast cancer in randomized controlled trials (RCTs). Embase, APA PsychInfo, Journals@Ovid Full Text, Ovid MEDLINE, PubMed, and Cochrane Trials were searched until December 12, 2022, to identify RCTs on the use of Mepitel film for preventing or treating acute RD from breast cancer radiotherapy. Per-protocol analysis was used to compare outcomes, calculate pooled effect sizes, odds ratio (OR), and 95% confidence intervals (CI), and to create forest plots using random effects analysis in RevMan 5.4. Three RCTs were included in this review. Mepitel film significantly reduced the incidence of grade 3 RD (OR 0.15 95% CI 0.06, 0.37, p<0.0001) and grade 2 or 3 RD (OR 0.16 95% CI 0.04, 0.65, p=0.01) as scored on either the CTCAE or the RTOG scale. Additionally, Mepitel film significantly reduced RISRAS mean scores assessed by patients and combined researcher and patient (standardized mean difference (SMD) -7.59, 95% CI -14.42, -0.76, p=0.03; SMD -15.36, 95% CI -30.01, -0.71 p=0.04) but not the researcher component of the assessment tool (SMD -17.55, 95% CI -36.94, 1.84, p=0.08). Mepitel film reduced the incidence of acute RD and improved patient-reported outcomes with minimal side effects, the main one being itchiness. Future research should assess the feasibility of Mepitel film with respect to specific patient-reported outcomes such as health-related quality of life issues associated with its use.

Effects of microvascular decompression on quality-of-life in trigeminal neuralgia patients aged 70 years and older.

Trigeminal neuralgia (TN) occasionally affects older adults, frequently worsens, and becomes refractory to medication. Older adult patients with TN may consider microvascular decompression (MVD) for their treatment. No study examines MVD effects on older adult TN patients' health-related quality of life (HRQoL). The present study evaluates the HRQoL of TN patients aged 70 years and older before and after MVD. Adult TN patients who underwent MVD evaluated their HRQoL using the 36-Item Short-form (SF-36) Health Survey before and 6 months after MVD. The patients were divided into four groups according to their decade of age. The clinical parameters and operative outcomes were analyzed statistically. The SF-36 physical, mental, and role social component summary scores and eight domain scale scores were analyzed using a twoway repeated-measures analysis of variance (ANOVA) to compare the effects of age group and preoperative and postoperative time points. Among 57 adult patients (34 women, 23 men; mean age, 69 years; range, 30-89 years), 21 patients were in their seventies, and 11 were in their eighties. The SF-36 scores of patients in all age groups improved after MVD. Two-way repeated-measures ANOVA demonstrated a significant age group effect on the physical component summary and its physical functioning domain. A time point effect was significant on all component summaries and domains. There was a significant interaction between age group and time point effects on the bodily pain domain. These results suggested that patients 70 years and older had significant postoperative HRQoL improvement, but their improvement of physical-related HRQoL and multiple physical pain issues were limited. Impaired HRQoL in TN patients aged 70 years and older can improve after MVD. Careful management of multiple comorbidities and surgical risks enables MVD to be an appropriate treatment for older adult patients with refractory TN.

Trait emotional intelligence and quality of life in women with polycystic ovary syndrome: Dysmorphic concerns and general distress as mediators

ObjectivePolycystic Ovary Syndrome (PCOS) is the most common endocrine disorder among women. It is characterised by a variety of symptoms that can seriously impair one's health-related quality of life (HRQoL). Dysmorphic concerns and general distress appear to be related to the development of HRQoL issues, whilst trait emotional intelligence (trait EI) has been significantly linked to better adaptability to chronic conditions. The present study sought to test the hypothesis that an association between trait EI and HRQoL in individuals with PCOS would be mediated by dysmorphic concerns and to examine their relationship with general distress (depression, anxiety, and stress). MethodsQuestionnaires were administered to 478 individuals with PCOS to analyse trait EI, dysmorphic concerns, general distress, and HRQoL. ResultsThe results indicated that trait EI was negatively associated with dysmorphic concerns and general distress; dysmorphic concerns were positively related to general distress; dysmorphic concerns and general distress were negatively related to HRQoL; and dysmorphic concerns and general distress had a mediating role in the relationship between trait EI and HRQoL. ConclusionThe results suggest that individuals with PCOS may have a lower HRQoL and high levels of trait EI may represent a protective factor against poor HRQoL. The implications for clinical practice are discussed.

A review of health-related quality of life issues in children suffering from certain key otolaryngological illnesses.

The health-related quality of life (HRQoL) concept is nowadays increasingly and more broadly used for helping evaluate the effectiveness of medical treatment, superseding the earlier "quality of life" approach. The HRQoL concept likewise applies to otolaryngology and this narrative review study is focused on HRQoL outcomes in four key childhood otolaryngological diseases as reported in the literature. To retrospectively evaluate the literature on measuring HRQoL in children suffering from selected otolaryngological illnesses, during treatment. Published studies/case reports were searched for in Medline, PubMed, Web of Science, Scopus and ORCID on the quality of life based on paediatric patient questionnaires, whether completed by subjects themselves or by their parents (by proxy). The following key words were used: health quality of life, otolaryngology/ENT, pediatrics/paediatrics. Studies before 1999 were omitted because hitherto, the "quality of life" had been imprecisely defined thus rendering any subsequent comparisions problematic. HRQoL scores and well-being were found to significantly deteriorate in child patients suffering from four important otolaryngological disorders: chronic sinusitis, nasal septum deviation, adenoid hypertrophy and hearing disease. The main problems found were infection, inflammation, disruption to family life and child-parental interaction, fitness-related issues, reduced ENT patencies and apnea. The HRQoL appears to significantly deteriorate in children suffering from otolaryngological diseases. Further such studies are needed for other ENT diseases.

Associations between Continuing Symptoms and Quality of Life in Post-COVID-19 Patients (2023)

COVID-19 is a multisystem disease that can cause various symptoms which last even after the acute stage and negatively impact the quality of life of patients. It is of utmost importance to comprehensively evaluate how COVID-19 affects not only patients’ physical and mental health, but also their family and social life. This knowledge plays a significant role in the creation of effective ways to assist those suffering from long COVID to address health-related quality of life issues in a timely manner.

Impact of Rheumatic Diseases on Oral Health-Related Quality of Life.

Introduction Oral-health-related quality of life (OHRQoL) represents a part of the general health-related quality of life (HRQoL). This OHRQoL indicates someone's subjective knowledge of a patient's oral health status, which is mostly associated with physical conditions and general HRQoL issues. A report by the World Health Organization labeled rheumatic and musculoskeletal diseases as the second most reported cause of disability worldwide. Considering their potential influence on the masticatory system, rheumatic diseases (RDs) can significantly affect oral health and the quality of life. Objective This study aimed to evaluate the impact of RDs on OHRQoL, including oral complaints, oral habits, oral functions, and dental care. Materials and methods This cross-sectional, multicenter study was conducted in multi-governmental medical and dental institutions in Riyadh, Saudi Arabia. The research was approved by the ethics committee Institutional Review Board (IRB). The validated surveys were distributed to the subjects manually. Data were analyzed using Statistical Package for the Social Sciences (SPSS) 23.0 software, and all parameters were expressed in frequencies and percentages. Results The study included 108 patients: 10 males (9.3%) and 98 (90.7%) females. Approximately 81% of the study group reported occasional changes in the quality of life caused by oral or temporomandibular joint (TMJ) problems. Dental caries and periodontal diseases were the most commonly reported complaints (73.1%). Regarding oral manifestations of RDs affecting the quality of life, 91.7% of participants never experienced difficulty speaking and taste changes; pain and discomfort in the mouth were always present in 4.6% of the participants. Conclusion Patients with RDs exhibited reduced OHRQoL, with several differences between the entities. Specifically, OHRQoL decreased in diseases with more oral manifestations, such as systemic lupus erythematosus (SLE) andrheumatoid arthritis (RA), which showed a high percentage in this study (SLE, about 27.8%; RA, 62%).

QLTI-23. BRAIN TUMOR-RELATED PAIN: INNOVATIVE APPROACHES TO DIAGNOSIS, TREATMENT, AND QUALITY OF LIFE ISSUES: A SYSTEMATIC REVIEW AND META-ANALYSIS

Abstract OBJECTIVE The purpose of this systematic review and meta-analysis is to evaluate the various innovative approaches to diagnosing and treating patients presenting with brain tumor-related pain. BACKGROUND Brain tumors make up for lower than 2% of all cancers, which is heavily linked to high morbidity, deteriorated quality of life, and the death of the affected patients. Glioblastoma (GBM) makes up 38% of the malignant brain glioma.The main treatment approaches for gliomas are widely dependent on chemotherapy and radiation therapy. However, these methods have been associated with vast side effects which constitute the quality of life of the patient. METHODS This systematic review and meta-analysis conformed to PRISMA guidelines. A total of 3025 studies were assessed through the eligibility criteria to remain with twenty eligible studies. The included studies were then grouped into two categories; group one comprised 14 studies that focused on an innovative approach to diagnosis and treatment of gliomas, and six studies comprised of studies that focused on health-related quality of life (HRQoL) of patients with brain tumors. RESULTS Twenty studies that met the inclusion criteria were analyzed independently and in two groups: diagnosis and treatment and quality of life issues of brain tumor patients. In one group, one study revealed a relatively progression-free survival (PFS) going up to 57 weeks and overall survival (OS) time of more than 20 weeks after the initial surgery. Group two indicated HRQoL issues associated with symptoms such as headaches, fatigue, trauma, cognitive and personality dysfunction, leg weakness, and neurological deficits. CONCLUSION Timely diagnosis of the gliomas has significant improvements to the overall survival. Treatment approaches explored in the studies include Temozolomide (TZ), Gliadel Wafer, immunogeno-type, peptide vaccination, Bevacizumab, chemotherapy, radiation therapy, and Temsirolimus. Chemotherapy and radiation therapy have been linked to a deteriorated quality of life of the patients

Patient-reported long-term outcome following allogeneic hematopoietic stem cell transplantation in pediatric chronic myeloid leukemia.

BackgroundPediatric CML is very rare. Before the introduction of tyrosine kinase inhibitors (TKIs), allogeneic hematopoietic stem cell transplantation (HSCT) from a donor -if available- was the standard cure attempt. Data on the long-term outcome and health-related quality of life (HRQOL) in former pediatric CML patients undergoing HSCT are lacking.Study questionWe investigated long-term survivors’ self-reporting to a questionnaire sent out to patients formerly enrolled in pediatric CML-HSCT trials.MethodsIndividuals with CML transplanted at age <18 years were identified from the German Childhood Cancer Registry database. Long-term survivors received a questionnaire based on the SF-36 and FACT-BMT asking them to self-report HRQOL issues. (Ethical vote #541_20 B, Medical Faculty, University of Erlangen-Nürnberg).Results111/171 (64.9%) individuals survived HSCT long-term and 86/111 (77.5%) fulfilled all inclusion criteria and received the questionnaire. 37/86 (43%) participants (24 female, 13 male, median age at HSCT 12 years [range 2-18], median age at the time of the survey 29 years [range 18-43]) responded after a median follow-up period of 19 years (range 4-27) after HSCT. 10/37 (27%) participants underwent no regular medical follow-up examinations. Self-reported symptoms like chronic graft-versus-host disease (cGvHD)-associated organ impairments and conditioning regimen consequences could causatively not sharply be separated in each case. Complains comprised hypothyroidism (N=11, 30%), infertility (N=9, 24%), lung problems, dry eyes (each N=7, 19%), skin alterations (N=6, 17%), hair problems (N=4, 11%), and sexual dysfunction (N=3, 9%). 10 (27%) participants experienced 13 CML relapses after a median interval from HSCT of 31 months (range 2-93). Only one patient underwent 2nd SCT after failure of relapse treatment with TKIs. Six secondary malignancies (dysplastic melanocytic nevus and ALL, basal cell carcinoma (N=2), rhabdomyosarcoma, and thyroid carcinoma developed in 5 (13%) participants. As assessed by the SF-36 questionnaire, impaired physical health was mainly associated with cGvHD. The mental component summary score showed that also participants without cGvHD scored significantly lower than the general population. When assessed by the FACT-BMT, participants with cGvHD scored significantly lower while participants without cGvHD scored even 5 points higher than the data from controls. 18 (49%) participants considered the sequelae of HSCT an obstacle to education. Out of the total cohort, N=20 (54%), N=7 (19%), N=5 (14%), and N=4 (11%) participants worked full time, part-time, were unemployed, or had not yet finalized their education, respectively. 20 (54%) participants lived as singles, 8 (22%) lived in a partnership, 6 (16%) were married, and 3 (8%) had been divorced. Four (11%) participants reported a total number of 7 children.ConclusionThis first assessment of HRQOL in former pediatric patients with CML surviving HSCT for more than two decades demonstrates self-reported satisfactory well-being only in the absence of cGvHD. Research-based on self-reported outcomes sheds light on former patients’ perspectives and provides an additional layer of valuable knowledge for pediatric and adult hematologists. Regular follow-up examinations are mandatory helping to avoid that late secondary neoplasias, CML-relapse, and disorders forming the broad range of possible long-term consequences of HSCT are not detected too late.

Evolving Experimental Platforms to Evaluate Ulcerative Colitis.

Ulcerative colitis (UC) is a multifactorial disease defined by chronic intestinal inflammation with idiopathic origins. It has a predilection to affect the mucosal lining of the large intestines and rectum. Management of UC depends upon numerous factors that include disease pathogenesis and severity that are maintained via medical or surgical means. Chronic inflammation that is left untreated or managed poorly from a clinical stance can result in intestinal ulceration accompanied by resulting physiological dysfunction. End-stage UC is mediated by surgical intervention with the resection of diseased tissue. This can lead to numerous health-related quality of life issues but is considered a curative approach. Regimens to treat UC are ever evolving and find their basis within various platforms to evaluate and treat UC. Numerous modeling systems have been examined to delineate potential mechanisms of action. However, UC is a heterogenous disease spanning unknown genetic origins coupled with environmental factors that can influence disease outcomes and related treatment procedures. Unfortunately, there is no one-size-fits-all model to fully assess all facets of UC. Within the context of this review article, the utility of various approaches that have been employed to gain insight into different aspects of UC will be investigated.

Health-Related Quality of Life (HRQoL) of Patients with Tuberculosis: A Review

Tuberculosis (TB) is a major killer and cause of human suffering worldwide and imposes a substantial reduction in patients’ health-related quality of life (HRQoL). HRQoL indicates the consciousness of patients regarding their physical and mental health. It is, therefore, very relevant in comprehending and measuring the exact impact of the disease state. Therefore, we undertook this review to summarize the available evidence on the impact of TB and its treatment on HRQoL. An in-depth understanding of HRQoL in TB patients can identify the existing management gaps. We undertook a systematic search through PubMed and CENTRAL. Data were extracted and tabulated for study design, targeted population, QoL instrument used, QoL domain assessed, and key findings. We included studies that assessed the effect of TB on the QoL both during and after treatment. There are no specific HRQoL assessment tools for utilization among TB patients. HRQoL is markedly impaired in patients with TB. The factors affecting HRQoL differ with active and latent TB, socio-demographics, socio-economic status, presence of co-infections, etc. This review’s findings can help to frame appropriate policies for tackling HRQoL issues in TB patients.

Health-Related Quality of Life and Side Effects in Gastrointestinal Stromal Tumor (GIST) Patients Treated with Tyrosine Kinase Inhibitors: A Systematic Review of the Literature

Simple SummaryGastrointestinal stromal tumors (GISTs) are the most common mesenchymal tumors of the gastrointestinal tract, mostly driven by activating mutations in KIT or PDGFRα oncogenes. The introduction of tyrosine kinase inhibitors (TKIs) has revolutionized the treatment of GIST resulting in a substantial gain in median overall survival. Nowadays, imatinib, sunitinib, regorafenib, and ripretinib are registered as first, second, third, and fourth-line therapies, and avapritinib is registered specifically for GISTs harboring a PDGFRα exon 18/D842V mutation. As a result, health-related quality of life (HRQoL) has become more relevant for this surviving population, which is increasing in number. In daily clinical practice, the side effects of TKIs and their impact on the daily lives of patients are the main reason for treatment adjustments. Currently, an overview of HRQoL issues and side effects of different TKIs registered for the treatment of GIST is lacking.Background: The introduction of tyrosine kinase inhibitors (TKIs) has revolutionized the treatment of gastrointestinal stromal tumors (GISTs), resulting in a substantial gain in median overall survival. Subsequently, health-related quality of life (HRQoL) has become more relevant. Here, we systematically review the available literature on HRQoL issues and side effects of different TKIs registered for the treatment of GIST. Methods: A search through five databases was performed. Full reports in English describing HRQoL outcomes and/or side effects in GIST patients on TKI therapy were included. Results: A total of 104 papers were included; 13 studies addressed HRQoL, and 96 studies investigated adverse events. HRQoL in patients treated with imatinib, regorafenib, and ripretinib remained stable, whereas most sunitinib-treated patients reported a decrease in HRQoL. Severe fatigue and fear of recurrence or progression were specifically assessed as HRQoL issues and had a negative impact on overall HRQoL as well as psychological and physical well-being. The majority of studies focused on physician-reported side effects. Nearly all GIST patients treated with a TKI experienced at least one adverse event, mostly mild to moderate. Conclusions: Despite the fact that almost all patients treated with a TKI experienced side effects, this did not seem to affect overall HRQoL during TKI therapy. In daily practice, it are the side effects that hamper a patient’s HRQoL resulting in treatment adjustments, suggesting that the reported side effects were underestimated by physicians, or the measures used to assess HRQoL do not capture all relevant issues that determine a GIST patient’s HRQoL.

Health-Related Quality of Life in Adrenocortical Carcinoma: Development of the Disease-Specific Questionnaire ACC-QOL and Results from the PROFILES Registry.

We aimed to develop a disease-specific adrenocortical carcinoma (ACC) health-related quality of life (HRQoL) questionnaire (ACC-QOL) and assess HRQoL in a population-based cohort of patients with ACC. Development was in line with European Organization for Research and Treatment of Cancer (EORTC) guidelines, though not an EORTC product. In phase I and II, we identified 90 potential HRQoL issues using literature and focus groups, which were reduced to 39 by healthcare professionals. Pilot testing resulted in 28 questions, to be used alongside the EORTC QLQ-C30. In Phase III, 100 patients with ACC were asked to complete the questionnaires twice in the PROFILES registry (3-month interval, respondents: first 67, second 51). Confirmatory factor analysis demonstrated the structural validity of 26 questions with their scale structure (mitotane side-effects, hypercortisolism/hydrocortisone effects, emotional effects). Internal consistency and reliability were good (Cronbach's alpha 0.897, Interclass correlation coefficient 0.860). Responsiveness analysis showed good discriminative ability (AUC 0.788). Patients diagnosed more than 5 years ago reported a good HRQoL compared with the Dutch reference population, but experienced residual fatigue and emotional problems. Patients who underwent recent treatment reported a lower HRQoL and problems in several domains. In conclusion, we developed an ACC-specific HRQoL questionnaire with good psychometric properties.

Symptoms reported by gastrointestinal stromal tumour (GIST) patients on imatinib treatment: combining questionnaire and forum data

PurposeTreatment with the tyrosine kinase inhibitor (TKI) imatinib in patients with gastrointestinal stromal tumours (GIST) causes symptoms that could negatively impact health-related quality of life (HRQoL). Treatment-related symptoms are usually clinician-reported and little is known about patient reports. We used survey and online patient forum data to investigate (1) prevalence of patient-reported symptoms; (2) coverage of symptoms mentioned on the forum by existing HRQoL questionnaires; and (3) priorities of prevalent symptoms in HRQoL assessment.MethodsIn the cross-sectional population-based survey study, Dutch GIST patients completed items from the EORTC QLQ-C30 and Symptom-Based Questionnaire (SBQ). In the forum study, machine learning algorithms were used to extract TKI side-effects from English messages on an international online forum for GIST patients. Prevalence of symptoms related to imatinib treatment in both sources was calculated and exploratively compared.ResultsFatigue and muscle pain or cramps were reported most frequently. Seven out of 10 most reported symptoms (i.e. fatigue, muscle pain or cramps, facial swelling, joint pain, skin problems, diarrhoea, and oedema) overlapped between the two sources. Alopecia was frequently mentioned on the forum, but not in the survey. Four out of 10 most reported symptoms on the online forum are covered by the EORTC QLQ-C30. The EORTC-SBQ and EORTC Item Library cover 9 and 10 symptoms, respectively.ConclusionThis first overview of patient-reported imatinib-related symptoms from two data sources helps to determine coverage of items in existing questionnaires, and prioritize HRQoL issues. Combining cancer-generic instruments with treatment-specific item lists will improve future HRQoL assessment in care and research in GIST patients using TKI.