Health-related Quality Of Life Issues Research Articles

Patient and Partner Perspectives on Health-Related Quality of Life in Adrenocortical Carcinoma.

Little is known about the impact of adrenocortical carcinoma (ACC) on health-related quality of life (HRQoL), and no disease-specific questionnaire exists. This qualitative study aimed to identify relevant domains of HRQoL for patients with ACC.In 2 focus group interviews, we discussed concerns regarding living with ACC and its treatments. The first group consisted of 6 patients on mitotane therapy and their partners or relatives, the second group of 4 patients after surgery alone and their partners. Inductive qualitative content analysis was used to analyze the interviews.We identified 4 domains related to HRQoL in patients with ACC, namely physical complaints, mental consequences, social consequences, and functional limitations. For example, physical complaints included symptoms of the disease and side effects of mitotane therapy; mental consequences included feeling insecure and living from scan to scan; and functional limitations included daily activities and mobility. We further found that patients’ experiences with the health care system and health care professionals and partner perspectives influence HRQoL.In conclusion, ACC has a large impact on HRQoL in 4 domains. These results can be used to improve communication about HRQoL issues. We will use our findings to generate a disease-specific questionnaire to measure HRQoL in patients with ACC.

Health-Related Quality of Life Issues of Patients Affected by Desmoid-Type Fibromatosis; Experiences from Two Countries

Health-Related Quality of Life Issues of Patients Affected by Desmoid-Type Fibromatosis; Experiences from Two Countries

Development and preliminary validation of the Adolescent Psoriasis Quality of Life instrument: a disease-specific measure of quality of life in adolescents with psoriasis.

SummaryBackgroundNo age‐appropriate and disease‐specific instrument currently exists to measure health‐related quality of life in adolescents with psoriasis (patients aged 12–17 years).ObjectivesTo develop and provide preliminary validation of the Adolescent Psoriasis Quality of Life instrument.MethodsQualitative interviews with adolescents with psoriasis, parents of adolescents with psoriasis, and healthcare professionals informed the development of an initial item pool for the instrument, which was subsequently refined through cognitive interviews. Finally, data from an independent sample of adolescents with psoriasis (n = 50) were used for item reduction, scale construction and initial validation, using a combination of techniques from classical test theory and Rasch modelling.ResultsRich qualitative data concerning health‐related quality of life in adolescents with psoriasis (from 18 adolescents, 14 parents and four healthcare professionals), combined with cognitive interview testing (n = 12), resulted in a 41‐item draft version. Item reduction led to the final version, a 17‐item instrument consisting of two subscales showing good fit to their respective Rasch models: psychosocial impact (12 items) and the impact of physical symptoms and treatment (five items). All a priori stated hypotheses regarding construct validity were supported. Both subscales and the total scale showed acceptable test–retest reliabilities (intraclass correlations 0·97, 0·89 and 0·96) and internal consistencies (Cronbach's α 0·94, 0·81 and 0·95).ConclusionsThe preliminary form of the Adolescent Psoriasis Quality of Life instrument shows promising psychometric properties. It can be used in daily clinical practice and research to support a patient‐centred approach and inform treatment planning. What's already known about this topic? Health‐related quality of life (HRQoL) instruments should be targeted towards narrowly defined age groups, as life contexts of children, adolescents and adults may differ substantially.Dermatology‐specific instruments have been used to measure HRQoL in adolescents with psoriasis, but it is not known whether these instruments accurately capture all relevant HRQoL aspects in adolescent psoriasis.Age‐appropriate and psoriasis‐specific instruments may be more sensitive for HRQoL issues experienced by this unique group. What does this study add? The Adolescent Psoriasis Quality of Life instrument represents the first age‐appropriate and disease‐specific instrument for measuring HRQoL in adolescents (12–17 years old) with psoriasis.It is intended for use in daily clinical practice to support dermatologists and other healthcare professionals in providing optimal care for adolescents with psoriasis.

Measurement of health-related quality of life in pediatric organ transplantation recipients: a systematic review of the PedsQL transplant module.

To collect and assess the extant empirical literature assessing disease-specific health-related quality of life (HRQOL) in pediatric transplant recipients using the PedsQL 3.0 Transplant Module (PedsQL-TM) assessment. A systematic search and review procedure was conducted of research reporting use and results of the PedsQL-TM with samples of pediatric heart, liver, kidney, and lung transplantation. Searches were conducted in nine scholarly databases and two additional sources to identify unpublished research. Multiple reviewers screened studies meeting inclusion criteria in accordance with PRISMA guidelines. A final sample of nine studies reported findings for the PedsQL-TM with pediatric organ transplant recipients. Most studies relied on either kidney or liver transplant recipients from single pediatric transplant centers. Factor validity of the PedsQL-TM and inter-rater reliability (IRR) between patients and parents have not been adequately determined. Internal consistency reliability was found as acceptable or excellent across multiple studies. PedsQL-TM scores were found to vary with other HRQOL issues, yet few studies examined their association with medication adherence or posttransplant health outcomes. With the goal of enhancing and sustaining HRQOL in pediatric organ transplant recipients, the need for a psychometrically valid and reliable measure of transplant-specific HRQOL is apparent. Research on the PedsQL-TM supports the promise of this measure although future efforts should be taken to examine measurement issues such as factor validity and IRR. Assessing transplant-specific HRQOL in these patients is paramount for their care and appropriate decision-making by patients, families, and the transplant team.

Quality-of-life issues and symptoms reported by patients living with haematological malignancy: a qualitative study.

Background:Our aim was to identify health-related quality-of-life (HRQoL) issues and symptoms in patients with haematological malignancies (HMs) and develop a conceptual framework to reflect the inter-relation between them.Methods:A total of 129 patients with HMs were interviewed in a UK multicentre qualitative study. All interviews were audio recorded, transcribed and analysed using NVivo-11.Results:Overall, 34 issues were reported by patients and were grouped into two parts: quality of life (QoL) and symptoms. The most prevalent HRQoL issues were: eating and drinking habits; social life; physical activity; sleep; and psychological well-being. Furthermore, most prevalent disease-related symptoms were: tiredness; feeling unwell; breathlessness; lack of energy; and back pain. The most prevalent treatment side effects were: tiredness; feeling sick; disturbance in sense of taste; and breathlessness.Conclusions:Both HMs and their treatments have a significant impact on patients’ HRQoL, in particular on issues such as job-role change, body image and impact on finances.

Introduction.

This is my first year as Chairman of the Australian Dental Research Foundation (ADRF). I have served on the Board and Executive of the Foundation since 2011, as Chairman of the Research Advisory Committee (RAC) from 2011 to 2016, and as a Member of the RAC from 2007 to 2011. As Chairman, I am grateful for the opportunity to showcase the work of our researchers in the Australian Dental Journal (ADJ) ADRF Special Research Supplement. This Supplement provides a snapshot of the completed research projects undertaken by students, researchers and academics from across the country. It provides the busy clinician reader of the ADJ with distilled insight into the efforts of the dental research community, while simultaneously disseminating the findings from these projects to industry and the wider scientific community. Not only is the Supplement an important witness to the work of our researchers and the funding provided by the Foundation to support them; it also acknowledges the individuals, industry and organisations who have supported the Foundation through named research awards and grants. This Supplement covers a wide range of material from motor impairment and oral health-related quality of life issues in children with Cerebral Palsy, through to the exomic profile of oral precancer and the genotoxic effects of alcohol-containing mouthwashes on dysplastic oral keratinocytes. The projects cover the broad areas of basic, clinical and translational research. Bereza and colleagues demonstrate that mice with a genetic mutation in EFNB1 demonstrate increased skull size, eye socket distance and nasal bone width, promoting this as a model for patients with Craniofontonasal Dysplasia. Hamlet and Ivanovski use a diabetic animal model to demonstrate that proteins associated with wound healing and the regulation of inflammation are preferentially adsorbed onto titanium with a micro-rough hydrophilic surface suggesting implants with this surface may better integrate with bone in diabetic subjects. Finally, using modern genetic methods exploring the risk for dental caries in children, Johnson and colleagues found that new bacteria associated with severe decay depended more on a child’s environment, especially diet, than on maternal influences, and that the mix of bacteria in the mouth could be changed by topical applications of disinfectant and fluoride resulting in a health-associated flora which could last as long as a year. The Board of the Foundation is indebted to the Australian Dental Journal and its Editor, Professor Mark Bartold for supporting this initiative. I am also appreciative of the work of the Chairman of the RAC, Professor Saso Ivanovski and the ADRF Services Officer, Jane Levey for assisting with its compilation. On behalf of the Board, I appreciate the opportunity to present this ADRF Special Research Supplement and its abstracts to you.

1682P - Health-related quality of life issues of patients affected by desmoid-type fibromatosis: Experiences from two countries

BackgroundDesmoid-type fibromatosis (DTF) is a rare, non-metastasising soft tissue tumour, which by local growth can significantly impact health related quality of life (HRQL). We aimed to identify the most important HRQL-issues of DTF patients. MethodsDTF patients and health care professionals (HCPs) from the Netherlands and the United Kingdom individually ranked 124 issues according to their relevance. Patients also completed the European Organisation for Research and Treatment of Cancer QLQ-C30 core questionnaire (EORTC QLQ-C30). Outcomes of both groups were used to identify the most important HRQL-issues. ResultsThe 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 scores of 3.0, 2.9 and 2.8 respectively out of a total of 4 points. British patients scored higher on most issues compared to Dutch patients. Similarly, all HCPs (n=31) gave higher scores on most issues compared to patients (total mean score of 2.3 versus a total mean of 1.9 for patients). The EORTC QLQ-C30 sum of scores was relatively high with a mean score of 77 points out of 100. ConclusionsPatients affected by DTF experience psychological issues regarding the unpredictable tumour growth behaviour. Validation in a large international cohort is needed to devise a HRQL-questionnaire specific to DTF patients to fully address their needs. Legal entity responsible for the studyThe authors. FundingStichting Coolsingel Rotterdam. DisclosureAll authors have declared no conflicts of interest.

Bloodstream infections in the elderly: what is the real goal?

Bloodstream infections (BSI) represent a serious bacterial infection with substantial morbidity and mortality. Population-based studies demonstrate an increased incidence, especially among elderly patients. Controversy exists regarding whether presentation of BSI are different in older patients compared to younger patients; our narrative review of the literature suggests that BSI in elderly patients would probably include one or more of the traditional symptoms/signs of fever, severe sepsis or septic shock, acute kidney injury, and/or leukocytosis. Sources of BSI in older adults are most commonly the urinary tract (more so than in younger adults) and the respiratory tract. Gram-negative bacteria are the most common isolates in the old (~ 40-60% of BSI); isolates from the elderly patient population show higher antibiotic resistance rates, with long-term care facilities serving as reservoirs for multidrug-resistant bacteria. BSI entail significantly higher rates of mortality in older age, both short and long term. Some of the risk factors for mortality are modifiable, such as the appropriateness of empirical antibiotic therapy and nosocomial acquisition of infection. Health-related quality of life issues regarding the elderly patient with BSI are not well addressed in the literature. Utilization of comprehensive geriatric assessment and comprehensive geriatric discharge planning need to be investigated further in this setting and might serve as key for improved results in this population. In this review, we address all these aspects of BSI in old patients with emphasis on future goals for management and research.

The impact of urinary stone disease and their treatment on patients\u2019 quality of life: a qualitative study

Urinary stone disease is a common, often recurrent disease, that can have a negative impact on patients’ health-related quality of life (HRQoL), often effecting working, productive members of society. The literature lacks data from structured, qualitative research which could give unique insight into patients’ HRQoL. The objective is to understand the impact of urinary stone disease and treatments on patients’ HRQoL, from patients’ and their relatives’ perspective using qualitative and quantitative methodologies. Semi-structured interviews and a focus group were used to understand the HRQoL issues of patients with urinary stones disease, covering the American Urology Association index stone categories. Thematic analysis was performed (using qualitative data analysis software). Familial impact was assessed using the family-related outcome measure (FROM-16©). 62 patients with stone disease and interventions (mean age 51, range 19–92) participated. Data collection stopped when data saturation was achieved. Analysis revealed negative impact of stone disease and interventions on the patients’ HRQoL, affecting domains of pain, physical symptoms, outlook on life, work/career, change in lifestyle/diet, social life, difficulties of daily living, travel/holiday problems, relationships and family member impact (106 themes grouped under ten broad headings). Sub-group analyses revealed similar impact in either sex, ureteric and renal stone groups. Recurrent stones were associated with work/financial concerns and treatment preferences varied accordingly. Our qualitative study presents detailed insights into the multidimensional impact of urinary calculi and their treatments on various domains of the HRQoL, confirming previous findings and adding new observations. The findings are expected to help in the development of patient-centric measures and communication tools.

Review of currently used standardized measures of quality of life after ventral incisional hernia repair: systematic review

After advancements in surgical and anaesthetics expertise and increased life spans among patients with complex abdominal surgeries, clinicians are left with the next main challenge, to how to improve the quality of life in patients with incisional hernia resulted from previous complex abdominal surgeries. To date there is no consensus over the choice of instrument and time frame for its administration in the literature. The aim of this review was to search for the current literature on measurement of quality of life in patients with ventral incisional hernia repair and to explore how effective each QOL instrument was for measuring impact on quality of life after ventral incisional hernia repair. In accordance with PRISMA guidelines two independent clinicians searched for Mesh and specific terms related to quality of life in patients with ventral incisional hernia. Search was made on PubMed, Embase and other research databases. Trial registries were searched for any published or unpublished trials. Literature search came up with 461 articles. After scanning and removal of duplication, 200 articles were subjected to inclusion and exclusion criterion and 59 articles were selected for qualitative analysis. Different scales for the measurement of quality of life after ventral incisional hernia repair were found. The incidence of incisional hernia itself was found to be the biggest determinant of poor quality of life, regardless of timescale of follow up and type of surgery performed. No single instrument was found to be complete enough to address the wide-ranging health-related quality of life issues in patients after incisional hernia repair.

A disease-specific Quality of Life questionnaire for primary aldosteronism.

ObjectiveTo develop a primary aldosteronism (PA) disease-specific Health-Related Quality of Life (HRQoL) questionnaire.MethodsWe included newly diagnosed patients with PA (n = 26), and patients with PA after adrenalectomy (n = 25) or treated with mineralocorticoid receptor antagonists (n = 25). According to the guidelines for developing HRQoL questionnaires from the European Organization for Research and Treatment of Cancer (EORTC): Phase I: systematic literature review followed by focus group meetings with patients (n = 13) resulting in a list of 94 HRQoL issues. Relevance of issues was rated by 18 other patients and by health care professionals (n = 15), resulting in 30 remaining issues. Phase II: selected issues were converted into questions. Phase III: the provisional questionnaire was pre-tested by a third group of patients (n = 45) who also completed the EORTC core Quality of Life questionnaire (QLQ-C30). Psychometric testing resulted in a final selection of questions with their scale structure.ResultsAfter the collection and selection of HRQoL issues a provisional questionnaire consisting of 30 items was formed. Of these items, 26 could be assigned to one of the four scales ‘physical and mental fatigue’, ‘anxiety and stress’, ‘fluid balance’ and ‘other complaints’ cumulatively accounting for 68% of variation in all items. All scales had good reliability and validity. There was a significant correlation of all four scales with the QLQ-C30 in most cases.ConclusionsWe developed the first PA-specific HRQoL questionnaire (PA-QoL) using standard, methodologically proven guidelines. After completion of the final validation (phase IV, international field testing), the questionnaire can be implemented into clinical practice.

Health-related quality of life in patients with systemic lupus erythematosus: a Spanish study based on patient reports.

Systemic lupus erythematosus (SLE) is a disease that significantly affects the quality of life and welfare of patients. SLE patients can be classified into multimorbidity levels using Clinical Risk Groups (CRGs) to help to incorporate predictive models of health needs. The goal of this study was to correlate CRGs with health-related quality of life (HR-QoL) and costs in SLE patients. A questionnaire was administered to SLE patients in four hospital centers of the Valencian Community (Spain) between October 2015 and March 2016. The factors studied included HR-QoL (EQ-5D-5L and VAS), disease activity (SLAI/SELENA), damage (SLICC/ACR), and severity (IGK). The patients (N = 190, 92.06% female, age (mean ± SD) 47.23 ± 13.43years) were sorted according to health status in nine CRGs. We found that most SLE patients (> 70%) were in CRGs 5 and 6. The main HR-QoL issues in these patients were related to mobility, ability to perform usual activities, and pain/discomfort. The scores (mean ± SD) for EQ-5D-5L and VAS were 0.74 ± 0.25 and 65.67 ± 23.52, respectively. We found that the age of the patients negatively affected their HR-QoL (r = - 0.266). SLE direct costs per patient increased with each CRG group, representing 71.92% of the total costs, while indirect costs were highly variable. The average cost per patient with SLE amounted to €8432.85 (year 2014). Patients' quality of life is related with age, disease activity, damage, and severity. Age was the parameter which most affects HR-QoL. Most costs of SLE are concentrated in two CRGs in which the HR-QoL deteriorates sharply.

Haematological malignancy: Are we measuring what is important to patients? A systematic review of quality-of-life instruments.

The wide range of health-related quality-of-life (HRQoL) instruments used in haematology makes it challenging for haematologists and other care teammembers inpractice to select, use and understand the scoring system and finally interpret the results. The main objectives of this study were to: (a) provide a comprehensive list of quality-of-life issues important to patients suffering from haematological malignancies, identified through the literature; (b) provide a list of health-related quality-of-life (HRQoL) instruments used in haematological malignancies in both daily clinical practice and research; and (c) evaluate the relevance and comprehensibility of the identified instruments in haematological malignancies. Systematic literature review of two databases, followed by addition of articles by manual searching, was carried out. The articles focusing on the primary studies, which have used semi-structured/structured interviews or surveys to identify issues important to HM patients, and other studies describing the results of testing measurement properties, such as reliability, validity and responsiveness of the instruments currently used to evaluate the HRQoL in different HMs, were included. Fifty-seven studies reported development and validation of 30 HRQoL instruments, which have been used in haematology. Twenty-four studies were identified using qualitative methods to report HRQoL issues and symptoms from apatient's perspective. No identified instrument captured all the issues identified from the qualitative studies. None of the instruments reviewed appeared to have been developed for use in clinical practice and specifically for patients with HM, except MyPOS. Furthermore,measurement properties were established, largely, in clinical trial scenarios. There is a need fordevelopment of a new HRQoL instrument entirely based oninvolvement of patients with haematological malignancies.

Health-related quality of life, psychosocial functioning, and unmet health needs in patients with sarcoma: A systematic review.

Health-related quality of life (HRQoL), psychosocial distress, and unmet health needs are important patient-reported outcomes (PROs) for patients with sarcoma treated with curative intent. Syntheses of data on these PROs in patients with sarcoma are limited. A systematic review of peer-reviewed literature published between 2007 and 2017 was conducted using five databases, guided by the PRISMA and Cochrane reporting guidelines. Of 7240 articles identified, 31 were included in this review. Compared with healthy individuals, patients with sarcoma frequently scored lower in physical and psychological HRQoL domains and experienced higher rates of self-image issues, depression, and suicide. However, outcomes for patients with sarcoma were relatively comparable to those with other malignancies. Anxiety symptoms were more common in the diagnosis phase, while depressive symptoms were more common in the treatment phase. Patients who are older, female, and socially isolated often reported lower HRQoL. As a sarcoma-specific HRQoL instrument is not available, and all studies have used generic instruments, key issues may have been omitted. There are few studies reporting data for HRQoL, psychosocial issues, or unmet health needs in this population. A sarcoma-specific HRQoL instrument is needed to accurately describe outcomes in this population. There is a need for further qualitative research to conceptualise the HRQoL issues relevant to this population, against which to map existing HRQoL instruments and guide adaptation or creation of a new instrument.

Health-Related Quality of Life After Diagnosis and Treatment of Differentiated Thyroid Cancer and Association With Type of Surgical Treatment

Concerns around possible overdiagnosis and overtreatment of differentiated thyroid cancer (DTC) have been raised. Issues concerning health-related quality of life (HRQOL) after diagnosis and treatment of DTC are understudied in this patient group. To better understand the range of HRQOL outcomes, including possible adverse effects of treatment, associated with diagnosis and treatment of DTC and whether these outcomes vary by type of surgery received. This content analysis assessed responses to an open-ended question about outcomes and concerns after DTC diagnosis and treatment among patients ascertained from the major postsurgical thyroid cancer treatment center and the population-based Cancer Registry in Queensland, Australia. Participants were aged 18 to 79 years and recently diagnosed with throid cancer. Responses underwent analysis to identify and code emergent themes to describe HRQOL issues and adverse effects of treatment experienced. Quantitative analysis was used to explore whether surgery type was associated with HRQOL issues and/or adverse effects of treatment. Of 1416 eligible patients, 1005 (71.0%) participated. Data were collected from July 1, 2013, through August 31, 2016, and analyzed from January 11 through April 9, 2018. Issues concerning HRQOL. The analysis included 1005 patients (72.2% female [n = 726]; mean [SD] age, 52 [14.0 years) with DTC. Most patients were diagnosed with papillary thyroid cancer (889 of 1003 [88.6%]), had tumors smaller than 2 cm in size (564 of 1000 [56.4%]), and received a total thyroidectomy (791 of 1005 [78.7%]). Overall, 775 patients (77.1%) reported HRQOL issues after diagnosis and treatment of DTC. The following 4 main themes emerged from content analysis of patient responses: physical (663 [66.0%]), psychological (187 [18.6%]), lifestyle (82 [8.2%]), and no issue or adverse effect (246 [24.5%]). Patients who had a total thyroidectomy (without neck dissection) were 1.5 times (odds ratio, 1.49; 95% CI, 1.04-2.12) more likely to report an HRQOL issue or an adverse effect of treatment compared with patients who underwent a hemithyroidectomy. According to results of this study, patients diagnosed with DTC report wide-ranging HRQOL issues; these are more prevalent among patients who have total thyroidectomies rather than hemithyroidectomies. For patients with small, localized DTCs, hemithyroidectomy may offer fewer adverse effects of treatment and better HRQOL outcomes than total thyroidectomy. It appears that issues with HRQOL should be considered by patients and physicians when deciding on the best treatment approach after a diagnosis of DTC.

Pediatric Life After Concussion Evaluation Scale (PLACES): Utility of a Survey of Quality of Life During Recovery from Concussion

Current research indicates that pediatric patients experience quality-of-life (QOL) issues during recovery from concussion. However, measures of health related QOL issues in youth have generally focused on chronic illness and do not address the unique experience of brain injury. The Pediatric Life After Concussion Evaluation Scale (PLACES) was developed to gain a better understanding of youth perspectives on QOL during recovery from concussion. The PLACES is a self-rating instrument examining patient perspectives on cognition, emotion, social life, and school support. Study participants were 277 patients, receiving treatment for concussion at a single regional concussion clinic. Examination of reliability using Cronbach’s alpha indicated strong performance with internal consistency (r =.92). The Post-Concussion Symptom Scale (PCSS) was used for comparison as this measure is commonly used to examine patient symptoms in clinical settings. Convergent and divergent validity of the PLACES was examined. Convergent validity was evident across the two measures (r=.732, p=.001). Exploratory factor analysis identified 5 factors and indicated divergent factors related to emotion, social concerns, and school. Analyses demonstrated that the PLACES domains measure different aspects of quality of life issues during recovery from concussion than traditional symptom scales, thereby offering support for the proposed domain structure of the PLACES. This measure appears to provide additional information that is clinically relevant and not available on symptom scales. Initial psychometrics indicate that the PLACES has the potential to function as a QOL measure specific to concussion and will assist in greater specificity of treatment during recovery.

Does age matter? A comparison of health-related quality of life issues of adolescents and young adults with cancer

Health-related quality of life (HRQoL) concerns of adolescents and young adults (AYAs) aged 14-25years were compared with those of older adults (26-60years) with cancer. AYAs and older adults receiving curative intent treatment or supportive palliative care for cancer were recruited from eight research centres across Europe. Participants used a rating scale to score the relevance and importance of a list of 77 issues covering 10 areas of HRQoL concern: symptoms; activity restrictions; social; emotional; body image; self-appraisals; outlook on life; lifestyle; treatment-related and life beyond treatment. HRQoL issues were reviewed by 33 AYAs and 25 older adults. Several issues were recognised as relevant and important across all age groups: symptoms, emotional impact, outlook on life, lifestyle and treatment-related. A number of issues were more relevant or important to AYAs including interrupted education, greater motivation to achieve academic goals, increased maturity, boredom, fertility and change in living situation. While there is overlap in several of the HRQoL concerns across the age span, it is important that HRQoL measures used with AYAs capture the diverse and unique psychosocial aspects of this developmental stage.

Desmoid fibromatosis through the patients\u2019 eyes: time to change the focus and organisation of care?

PurposeDesmoid fibromatosis (DF) is a rare, unpredictable disease with no established, evidence-based treatments. Individual management is based on consensus algorithms. This study aimed to examine the specific health-related quality of life challenges faced by DF patients, current experiences and expectations of care.MethodsTwenty-seven DF patients were purposively sampled from The Royal Marsden Hospital. Two focus groups and 13 interviews (males 12, females 15; mean age at study 39.5 years) explored health-related quality of life issues and experiences of healthcare. Thematic content was analysed.ResultsDiscussions revealed four key themes (diagnostic pathway; treatment pathway; living with DF; supportive care). Diagnostic delay resulted from lack of recognition by patients and healthcare professionals. Some patients received an initial diagnosis of cancer, causing significant distress. Treatment decisions were challenging, and patients experienced uncertainty among clinicians about optimal therapies. Side-effects of treatment were severe, including fatigue, nausea, anorexia, low libido and depression. Pain was the most debilitating symptom and dependency on painkillers was a significant concern. Functional limitation and restricted mobility frequently affected daily activities. Patients experienced difficulty accomplishing their role in society; relationship problems, caring for children, employment and financial difficulties. Social isolation and lack of understanding were common. The psychological impact of this “life-changing and life-long” condition was profound. All patients requested knowledgeable healthcare professionals, more information, continuity of care and peer support.ConclusionsDF patients face complex physical, psychological and practical challenges. Comprehensive care services are needed. Increasing awareness may help to improve diagnostic pathways and overall patient experience.

Identification and assessment of health-related quality of life issues in patients with sporadic desmoid-type fibromatosis: a literature review and focus group study

PurposeSporadic desmoid-type fibromatosis (DTF) is a rare, chronic, non-metastasising, disease of the soft tissues. It is characterised by local invasive and unpredictable growth behaviour and a high propensity of local recurrence after surgery thereby often having a great impact on health-related quality of life (HRQL). This study aims to review currently used HRQL measures and to asses HRQL issues among DTF patients.MethodsA mixed methods methodology was used consisting of (1) a systematic literature review, according to the PRISMA guidelines (2009), using search terms related to sporadic DTF and HRQL in commonly used databases (e.g. Embase, Medline Ovid, Web of science, Cochrane Central, Psyc Info, and Google scholar), to provide an overview of measures previously used to evaluate HRQL among DTF patients; (2) focus groups to gain insight into HRQL issues experienced by DTF patients.ResultsThe search strategy identified thirteen articles reporting HRQL measures using a wide variety of cancer-specific HRQL tools, functional scores, symptom scales (e.g. NRS), and single-item outcomes (e.g. pain and functional impairment). No DTF-specific HRQL tool was found. Qualitative analysis of three focus groups (6 males, 9 females) showed that participants emphasised the negative impact of DTF and/or its treatment on several HRQL domains. Six themes were identified: (1) diagnosis, (2) treatment, (3) follow-up and recurrence, (4) physical domain, (5) psychological and emotional domain, and (6) social domain.ConclusionA DTF-specific HRQL tool and consensus regarding the preferred measurement tool among DTF patients is lacking. Our study indicates that HRQL of DTF patients was negatively affected in several domains. A DTF-specific HRQL measure could improve our understanding of short- and long-term effects and, ideally, can be used in both clinic and for research purposes.

Understanding the quality of life (QOL) issues in survivors of cancer: towards the development of an EORTC QOL cancer survivorship questionnaire

BackroundThe number of cancer survivors is growing steadily and increasingly, clinical trials are being designed to include long-term follow-up to assess not only survival, but also late effects and health-related quality of life (HRQOL). Therefore it is is essential to develop patient-reported outcome measures (PROMs) that capture the full range of issues relevant to disease-free cancer survivors. The objectives of this project are: 1) to develop a European Organisation for Research and Treatment of Cancer (EORTC) questionnaire that captures the full range of physical, mental and social HRQOL issues relevant to disease-free cancer survivors; and 2) to determine at which minimal time since completion of treatment the questionnaire should be used.MethodsWe reviewed 134 publications on cancer survivorship and interviewed 117 disease-free cancer survivors with 11 different types of cancer across 14 countries in Europe to generate an exhaustive, provisional list of HRQOL issues relevant to cancer survivors. The resulting issue list, the EORTC core questionnaire (QLQ-C30), and site-specific questionnaire modules were completed by a second group of 458 survivors.ResultsWe identified 116 generic survivorship issues. These issues covered body image, cognitive functioning, health behaviors, negative and positive outlook, health distress, mental health, fatigue, sleep problems, physical functioning, pain, several physical symptoms, social functioning, and sexual problems. Patients rated most of the acute symptoms of cancer and its treatment (e.g. nausea) as no longer relevant approximately one year after completion of treatment.ConclusionsCompared to existing cancer survivorship questionnaires, our findings underscore the relevance of assessing issues related to chronic physical side effects of treatment such as neuropathy and joint pain. We will further develop a core survivorship questionnaire and three site-specific modules for disease-free adult cancer survivors who are at least one year post-treatment.