QOL Tool Research Articles

Validation of a testosterone-deficiency symptoms rating-scale in prostate cancer patients treated with androgen deprivation therapy and radiotherapy.

63 Background: Androgen deprivation therapy (ADT) plays an important role in the management of non-metastatic prostate cancer (NMPC). We prospectively assessed the performance of a symptom rating scale, the aging men’s symptoms score (AMS) in relation to other validated QOL tools. Methods: Following ethics approval, 145 patients with a diagnosis of NMPC receiving ADT as part of radical treatment were enrolled after informed consent. Data was collected using the EORTC QLQ-C30, the AMS and the International Index of Erectile Function score (IIEF-5) questionnaires at baseline, 3 months (post ADT) and after ADT was stopped. Results: Eighty six (58.1%) patients had ADT for <9 months, 7 (4.7%) had 9 -18 months and 55 (37.2%) had 27-36 months. A third (32.3%) of patients had moderate/severe symptoms of testosterone deficiency (TD) at baseline vs 62% and 44.4% at time points 2 & 3 (p<0.0001). Severe erectile dysfunction was common and worsened with ADT (45.3% & 74.1% respectively) and did not recover post ADT (p<0.0001). Few (1.6%) patients retained normal erectile function at the end of the study vs 15.6% at baseline. Self-reported QoL using EORTC QLQ C30 (Q.30) remained high at all time points (80.8%, 76.2%,75.8% respectively for a score of 5-7, 7 =very good, 1=very poor). Conclusions: TD due to ADT resulted in significant symptoms only in a subset of patients and not all symptoms resolved post ADT. However, self-reported QoL remained unaffected indicating that andropause symptoms may not affect QoL in radically treated prostate patients. This prospective data validates AMS scale and it could be used in routine clinical practice to assess TD symptoms in this group. [Table: see text]

Quality of life in the contemporary politics of healthcare: … but what is a life?

‘Quality of life’ (QoL) is a ubiquitous phrase in medicine. There is considerable literature on the meaning of ‘quality’ in ‘quality of life’, but little on the meaning of ‘life’. And yet, rooted in measurements of QoL, is a conceptualization of ‘a life’ used to judge ‘quality’.In this article I focus on ‘life’ within institutional healthcare, arguing that for patients who are considered elderly, their life is defined against functionality.I use an autoethnographic method to enter this conversation, underlining the disjuncture between patients' understanding of ‘a life’, and that of healthcare professionals. I draw on the writings of the Italian philosopher Georgio Agamben to interrogate ‘life’, shifting the conversation of QoL from one of measurement and administration to one of political order. I discuss both the formal, evidence-based tools and the nature of their application. I conclude by arguing that QoL tools and their application, produce a particular kind of life, and that what is at stake in the invocation of ‘quality of life’ in health care is our very experience of aging and our embodiment.

Sham acupuncture is as efficacious as true acupuncture for the treatment of IBS: A randomized placebo controlled trial

Irritable bowel syndrome (IBS) patients increasingly seek out acupuncture therapy to alleviate symptoms, but it is unclear whether the benefit is due to a treatment-specific effect or a placebo response. This study examined whether true acupuncture is superior to sham acupuncture in relieving IBS symptoms and whether benefits were linked to purported acupuncture mechanisms. A double blind sham controlled acupuncture study was conducted with Rome I IBS patients receiving twice weekly true acupuncture for 4weeks (n=43) or sham acupuncture (n=36). Patients returned at 12weeks for a follow-up review. The primary endpoint of success as determined by whether patients met or exceeded their established goal for percentage symptom improvement. Questionnaires were completed for symptom severity scores, SF-36 and IBS-36 QOL tools, McGill pain score, and Pittsburg Sleep Quality Index. A subset of patients underwent barostat measurements of rectal sensation at baseline and 4weeks. A total of 53% in the true acupuncture group met their criteria for a successful treatment intervention, but this did not differ significantly from the sham group (42%). IBS symptom scores similarly improved in both groups. Scores also improved in the IBS-36, SF-36, and the Pittsburg Sleep Quality Index, but did not differ between groups. Rectal sensory thresholds were increased in both groups following treatment and pain scores decreased; however, these changes were similar between groups. The lack of differences in symptom outcomes between sham and true treatment acupuncture suggests that acupuncture does not have a specific treatment effect in IBS.

PDB39 - Increasing Trend Of Health Related Quality Of Life Awareness For Diabetic Care Among Indian Scientists

The health related quality of life (HRQoL) focused research in developing countries is scanty and far between, where 80% of healthcare cost is borne by the patient. Indian patients have different social, socioeconomic and personal outlook, therefore the HRQoL results from the western studies cannot be directly extrapolated to Asian populations. This study was conducted to make an assessment of the trends in HRQoL research in patients with diabetes in India and Asia vis-à-vis the western population. We performed literature searches in Pubmed, Clinicaltrials.gov and country-specific registries for 1985–2016 to identify studies investigating HRQoL in patients with diabetes and compared these with those for the US and the UK. Only 46 publications were identified from India, followed by Malaysia (31) and Singapore (25), which, respectively, make only 3.8, 2.5 and 2.0% of that published from USA. The contribution from Bangladesh, Pakistan, Indonesia, Philippines, Sri Lanka and Thailand was negligible. The increasing sensitivity of Indian scientists towards QoL was evident from the increasing number of publications over the years. The number of papers published for Indian populations increased from 2 in 1991-95 and 1996-2000, 4 in 2001-2005 and 7 in 2006-2010 to 31 in 2011-2016. Similar trends were also observed in other Asian countries. Most of the studies, including those from USA and UK employed generic HRQoL tools, viz. EQ-5D, SF-36, SF-12 and SF-6D. The diabetes specific assessment tools like ADDQoL were used very sparsely. A QoL tool (Quality of Life Instrument for Indian Diabetes patients, QOLID) specific for Indian patients with diabetes has also been developed recently but needs further validation. The need for research into the humanistic burden of diabetes is being increasingly recognized worldwide, including in Asian countries such as India, and may be expected to improve patient care.

AB084. The fertility quality of life (FertiQol) in Chinese infertile women

ObjectiveInfertility is defined as the failure to achieve clinical pregnancy after twelve months of regular unprotected sexual intercourse. In recent years, there is a rising trend of infertility in China, data shows that every eight couples have a pair of infertility, and the number of Chinese infertility patients has more than 50 million. Female infertility has various negative impacts on quality of life. In the past, various generic measurement tools were used for assessing Qol in infertile patients. Recently, a specifically Qol tool designed for infertile couples, has been developed and used internationally—The Fertility Quality of life(FertiQol)-questionaire. To the best of our knowledge, there was no published data regarding the general Qol in infertile women in mainland china. Our goal of this study is to understand the preliminary level of Qol in infertile women in mainland china, secondary aims was to compare Qol in women with primary and secondary infertility.MethodsThe FertiQol tool, a self-report questionnaire, was distributed to our department of Reproductive Center for infertile women who undergoing the treatment of in vitro fertilization from 2015.1 to 2015.4. Patients with primary and secondary infertility were compared for Qol subscales, and other confounding factors were investigated using multiple regression analysis.ResultsA total of 230 copies of eligible FertiQol questionnaires were collected, among them, 162 cases for primary infertility and 68 cases for Secondary infertility. The mean age of participants was 32.6±3.3 years and years of marriage was 4.2±1.3. Scores of mind-body (55.4), relational (57.4), environment (54.0), and tolerability (45.0) subscales in Chinese infertile women were lower than those (54.8, 68.7, 61.5 and 58.8) in western infertile women. According to the increase of infertility time, relational score (relation with husband) was decreased. Women with secondary infertility obtained higher scores in emotional, mind/body of the core subscale, and tolerability of the treatment subscale (P<0.05). Multiple regression analysis showed that the status of educational and secondary infertility had a positive impact.ConclusionsFertiQol scores were better in patients with secondary infertility and higher educational status. This is the first validation study of mainland Chinese FertiQoL, and potentially used as a guide for clinical counseling and future works.

Spiritual Assessment within Clinical Interventions Focused on Quality of Life Assessment in Palliative Care: A Secondary Analysis of a Systematic Review

One of the most crucial palliative care challenges is in determining how patients’ needs are defined and assessed. Although physical and psychological needs are commonly documented in patient’s charts, spiritual needs are less frequently reported. The aim of this review was to determine which explicit, longitudinal documentation of spiritual concerns would sufficiently affect clinical care to alleviate spiritual distress or promote spiritual wellbeing. A secondary analysis of a systematic review originally aimed at appraising the effectiveness of complex interventions focused on quality of life in palliative care was conducted. Five databases were searched for articles reporting interventions focused on QoL including at least two or more QoL dimensions. A narrative synthesis was performed to synthesize findings. In total, 10 studies were included. Only three studies included spiritual wellbeing assessment. Spirituality tools used to assess spiritual wellbeing were different between studies: Hospital QoL Index 14; Spiritual Needs Inventory; Missoula-Vitas QoL Index; and the Needs Assessment Tool: Progressive Disease-Cancer. Only one study reported a healthcare professional’s session training in the use of the QoL tool. Two out of three studies showed in participants an improvement in spiritual wellbeing, but changes in spiritual wellbeing scores were not significant. Overall patients receiving interventions focused on QoL assessment experienced both improvements in their QoL and in their spiritual needs. Although spiritual changes were not significant, the results provide evidence that a spiritual need exists and that spiritual care should be appropriately planned and delivered. Spiritual needs assessment precedes spiritual caring. It is essential that interventions focused on QoL assessment in palliative care include training on how to conduct a spiritual assessment and appropriate interventions to be offered to patients to address their spiritual needs.

Chronic rhinosinusitis and mood disturbance

IntroductionChronic rhinosinusitis (CRS) is a condition of inflammation of the nose and paranasal sinuses affecting 6.8 million Britons. It has a great impact on quality of life and productivity. CRS is currently subdivided into two main types – with and without nasal polyps (CRSwNPs and CRSsNPs respectively. Allergic fungal rhinosinusitis (AFRS) is severe subtype of CRSwNPs.ObjectivesThis study is part of the Chronic Rhinosinusitis Epidemiology Study (CRES). The overarching aim is to determine factors influencing onset and severity of CRS.AimsTo determine whether those with CRS are more likely to report mood disturbance compared with healthy controls.MethodsCRES is study-specific questionnaire asking about demographic and socioeconomic factors and past medical history as well as a nasal symptom score (SNOT-22) and SF-36 (QoL – quality of life tool). Questionnaires were distributed to patients with CRS attending ENT outpatient clinics at 30 centres across the United Kingdom from 2007–2013.ResultsA total of 1470 participants were recruited (Table 1). Differences between those with CRS and controls were found; those with CRSsNPs reported significantly more consultations with their GP for depression and anxiety. Patients with CRS also showed significantly poorer mental well-being than controls across the mental health and emotional well-being domains of the QoL tools used. Those with CRSsNPs scored significantly worse than those with nasal polyps across all domains.ConclusionsMood disturbance is significantly more common in patients with CRS compared to healthy controls, especially in those with CRSsNPs. This added mental health morbidity needs consideration when managing such patients.Disclosure of interestThe authors have not supplied their declaration of competing interest.

Assessments of outcome in haemophilia - what is the added value of QoL tools?

Access to treatment and especially to long-term regular replacement treatment with clotting factor concentrates (prophylaxis) have caused dramatic contrasts in the clinical picture between haemophilia populations. An individual patient with severe haemophilia age 20 years can have normal joints or can be severely crippled and unable to work. Assessment of outcome in a standardized way has therefore become essential. Discuss the relevance and utility of the different outcome assessment tools in patient groups with different access to treatment. In the last decade new outcome assessment tools specific for haemophilia have been developed that measure all aspects of health according to the International Classification of Functioning, Disability and Health (ICF) model. These tools are directed at assessing the clinical and radiological status of joints as well as overall functioning, such as participation and psychosocial aspects, evaluating overall health-related quality of life (HRQOL). For deciding which tools to use in clinical practice or research, one needs to consider the specific context with regard to disease burden, healthcare environment and socioeconomic background of the patients being evaluated. Prospective systematic assessment of outcome in haemophilia and related bleeding disorders is important. Based upon recent literature a critical appraisal of outcome tools is described.

Quality of life in epilepsy: a study of Brazilian adolescents.

ObjectiveOur objectives were: to assess the QOL of Brazilian adolescents with epilepsy with a specific QOL assessment tool; to compare the adolescents with epilepsy and healthy adolescents using a generic QOL assessment tool; to correlate the 2 different QOL assessment tools (the generic and the epilepsy-specific); and to correlate QOL scores of the adolescents with epilepsy obtained by both tools with physical, psychological and social variables of the disease.MethodsFifty subjects (case group) attending the outpatient clinic of epilepsy of the Clinics Hospital of UNICAMP, Campinas-SP, answered the Brazilian version of the QOL inventory for adolescents with epilepsy - QOLIE-AD-48 and the QOL Questionnaire - WHOQOL – BREF – Portuguese version. Fifty-one subjects (control group) from public schools in Campinas-SP answered only the WHOQOL-BREF.ResultsThe results showed that adolescents with epilepsy presented a good score of QOL in both tools; overall scores for both groups with WHOQOL-BREF were good, but a statistically significant difference was seen with regards to the Psychological domain of the WHOQOL-BREF favoring the control group. Significant correlations between QOLIE-AD-48 Total and WHOQOL domains were found. Adolescents that were considered seizure-free (P = 0.001), had good perception of seizure control (P = 0.012) and had not had occurrence of seizures in public places (P = 0.001) presented better QOL scores.ConclusionsBrazilian adolescents with epilepsy may present good QOL scores when they themselves consider the disease as under control; physical, social and especially psychological variables associated to the disease may play an important role in these results. As a generic QOL tool, WHOQOL-BREF was sufficient to allow for a comparison between chronic disease bearers and healthy adolescents and showed that the gap in QOL between both populations is not as extensive as once was thought, probably due to better support and adaptation to the disease.

507 Allogeneic Adipose-Derived Stem Cells for the Treatment of Crohn's Perianal Fistula: a Phase I/IIa Clinical Study

S A T A b st ra ct s Discussion: The QOL assessment was initially included in the COST trial to compare two surgical approaches for their impact on the patient. Together with other reports this study suggests that QOL tools also can provide an early indicator for patients at risk of complications. Further studies are needed to evaluate whether perioperative assessment of QOL may assist in reducing postoperative complications, length of hospital stay and readmission.

A134: Validation of Patient Reported Outomes Measurement Information System Modules for use in Childhood‐;onset Lupus

Background/Purpose:Childhood‐onset lupus (cSLE) is a chronic autoimmune disease and its effect on health‐related quality of life (HRQoL) has not been systematically established. The Patient Reported Outcomes Measurement Information System (PROMIS™, http://nihpromis.org) is a publicly available system to measure patient reported outcomes that features electronic data collection. Although several validated legacy QoL measures exist for cSLE, each is longer than the PROMIS™ Pediatric Short Forms (Short Forms). The objective of this study was to investigate the feasibility, construct and discriminant validity of the Short Forms in cSLE in a clinical setting.Methods:In this ongoing study at two sites, 98 of 100 projected patients completed the Pediatric PROMIS™ Short Forms (Anger, Anxiety, Depressive, Fatigue, Mobility, Upper Extremity, Pain Interference, Peer Relations) and legacy QoL measures (Pediatric Quality of Life Inventory™ Generic Core [GC] &amp; Rheumatology Modules [RM], Simple Measure Of Impact Of Lupus Erythematosus In Youngsters [SMILEY], Childhood Health Assessment Questionnaire [CHAQ], Child Health Questionnaire [CHQ], pain and well‐being visual analog scales [VAS]). Questionnaire scores were compared and Spearman correlation analysis was performed in support of the construct validity of the Short Forms when used in cSLE. The discriminant validity was supported by analysis of PROMIS™ and legacy QoL score change at sequential visits and relationship of change was made with Spearman correlation analysis (to be shown).Results:Participants (78% female; 41% White, 44% Black, 6% Asian) had a mean age of 16 yrs (SD 3) and mean SLEDAI score of 6.07 (SD 5.99). There were no problems with completion of any of the PROMIS™ Short Forms (mean score = 50, clinically relevant difference = 10) which required 5–10 minutes in total (legacy QoL tools &gt;15 min. each). On average, cSLE patients scored importantly worse in the Short Form assessing upper extremity function and mobility than the healthy children, while the other QoL domains were less affected (Table ). This is also supported by the scores of the CHQ–PHS. Concurrent validity of the Short Forms is supported by moderate correlations with the scores of various legacy measures (to be shown). Comparative scores for HRQoL in cSLE* PROMIS Short forms CHAQ PedsQL‐GC PedsQL‐RM SMILEY CHQ‐P50 Anger 52.0 (4.3) Emotional 74.1 (21.1) Worry 70.0 (27.6) Effect 63.3 (19.9) Behavior (BE) 83.4 (15.9) Anxiety 49.6 (3.8) Treatment 80.8 (15.0) Burden 60.1 (17.4) Mental Health (MH) 77.5 (15.9) Depression 51.9 (3.2) Self‐esteem (SE) 81.8 (15.5) Fatigue 53.5 (3.4) Role/Social Limits‐Physical (RP) 87.5 (25.8) Mobility 42.8 (3.5) Walk 0.3 (0.6) Physical 74.0 (20.3) Activity 87.0 (17.7) Limitation 68.2 (17.0) Physical Function (PF) 78.2 (30.5) Arise 0.4 (0.6) Hygiene 0.3 (0.7) Play 0.7 (0.9) Upper Extremity Function 46.1 (3.9) Dress &amp; Groom 0.3 (0.7) Physical Summary (PHS) 43.0 (13.2) Eat 0.3 (0.7) Reach 0.5 (0.8) Grip 0.4 (0.7) Pain 52.7 (3.1) Pain 66.1 (28.2) Bodily Pain/Discomfort (BP) 65.7 (29.7) Peer Relations 46.7 (3.5) Social 82.4 (20.0) Social 72.8 (18.6) Social &amp; Emotional Limits (REB) 86.0 (29.3) General Health Perception (GH) 56.6 (14.9) School 66.0 (20.3) Communicate 71.6 (27.6) Psychosocial Summary (PSS) 52.8 (7.9) Completed by Child Completed by Parent Values are means (standard deviations). The PROMIS™ short forms use T score distributions (50 represents the average for the US general population, with a standard deviation of 10. High scores represent more of the concept being measured (for negatively‐worded concepts like pain, fatigue, and anxiety, a 60 is one standard deviation worse than average; for positively‐worded concepts like physical or peer relationships, a 60 is one standard deviation better than average).Conclusion:This pilot study supports QoL measurement using the PROMIS™ Short Forms as feasible and concurrently valid. PROMIS™ measures can now be utilized by clinicians treating cSLE for a more efficient patient reported health outcomes measure, taking advantage of their easy interpretation of scores and changes in scores, thereby, reducing respondent burden and making QoL assessment feasible in both research and clinical care settings.

Comparison of generic and disease-specific measures of quality of life in first-episode psychosis

BackgroundQuality of life (QOL) is now recognised as an important measure of outcome that could potentially influence clinical decision-making for those with a first-episode psychosis (FEP). A number of QOL instruments are available however; many differ in their conceptual orientation which may have serious implications for the outcome of QOL studies, interpretation of findings and clinical utility. We aimed to compare two commonly used tools representing both generic and disease-specific constructs to examine whether both tools appraise the same underlying QOL traits and also whether disease-specific tools retain their psychometric properties when used in FEP groups. MethodsWe assessed 159 consecutive individuals presenting with FEP in a defined catchment area with two commonly used QOL tools and examined the findings using the multi-trait multi-method matrix. ResultsSimilarly named domains of QOL between both tools (Psychological Wellbeing, Physical Health, Social Relations) showed good convergent validity using confirmatory factor analysis. However, discriminant validity was not established given that domains loading onto their indicated latent factors were more strongly correlated with their non-corresponding latent factors. ConclusionsA major consideration in undertaking the present study was to assess the extent to which the outcome of QOL studies in FEP were valid and that systematic error did not provide another plausible explanation for findings. Establishing convergent validity demonstrates that either tool could be used satisfactorily to measure the QOL construct identified however; we did not establish discriminant validity. Doing so would have demonstrated that QOL domains are substantively different in that they contain some unique piece of information determining clinical utility. These findings are important for our understanding of multi-dimensional models of QOL.

A short and validated multiple sclerosis‐specific health‐related quality of life measurement for routine medical practice

Patient-reported health-related quality of life (Hr-QoL) is an essential end-point to assess the efficacy of multiple sclerosis (MS) treatment. Most QoL tools were developed for clinical research, for which measurement accuracy is required, irrespective of ease of use or the human resources needed. In routine medical practice (RMP), time and resources are limited, requiring simple and quick tools. Our objective was to set up a Hr-QoL measurement adapted for patients with MS, and providing an accurate estimate of Hr-QoL, whilst remaining easy to use and interpret in the RMP context. Literature searches, expert meetings and semi-structured interviews were used to gather relevant items and dimensions of existing scales. Scale development included item reduction and dimension identification through a cross-sectional observational study. The scale was validated on another independent representative sample. Statistically significant dimensions were identified using psychometric procedures, a Rasch polytomous model and iterative confirmatory factor analysis (CFA). From 12 potential dimensions, based on a sample of 331 patients with MS, the backward CFA identified physical, mental and energy dimensions, and item optimization selected 10 items constituting our Hr-QoL scale prototype. Its validity was assessed in an independent study of 457 patients with MS, which provided statistical evidence of reliability, reproducibility in time, invariance with regard to population subgroups and overall fitting with a Rasch polytomous model. Compared with existing alternatives, our 10-item three-dimensional Hr-QoL measurement tool is adapted to RMP, and constitutes an adequate compromise between precision and ease of use in patients with MS.

PRM37 Development and Use of a Health-Related Quality of Life Tool to Help Veterinarians and Pet Owners Assess Aging Changes in Pet Dogs

Many measures have been developed to assess the health-related quality of life (hrQoL) in humans but few have been developed for animals. Our goal was to develop a QoL instrument, completed by pet owners, that was able to reliably detect changes in QoL in healthy dogs as they age. An hrQoL tool was built with input from pet owners and veterinarians. The prototype QoL tool was tested with 167 pet owners of healthy dogs. A second survey was completed approximately two weeks later. Each pet owner was allowed to self-select their dog for inclusion, based on their personal assessment of the pet's health. The pet owners were veterinarian (n=34) and non-veterinarian (n=133) employees of Pfizer Animal Health. The validation process reduced the tool to 15 items in four domains (happiness, physical functioning, hygiene and mental status) and a single hrQoL assessment. The proposed hrQoL measure is brief (one page), has good known-groups and convergent validity, reliability and high internal consistency. When dogs were blocked by age into 3 year increments, the QOL score provided by the pet owner was high and essentially unchanged for the first 9 years. The pet owner QoL assessment dropped dramatically for dogs >10 years of age, mirroring the realization that the dog was “slowing down”. A calculated hrQoL score, derived from the component analysis, demonstrated a statistically significant (P<0.0001) and near-linear decline across age blocks as the dogs aged. A component analysis of many domains was also able to demonstrate a similar uniform age-related decline. Quality of life scoring can be used to help guide health care decisions for dogs as they age. Compared to the pet owner-derived score, using an hrQoL score derived from component analysis seems to be more reflective of the gradual age-related changes in a healthy dog.

COMPARISON OF SYMPTOMS AND QUALITY OF LIFE IN ATRIAL FIBRILLATION: RESULTS FROM THE ORBIT-AF REGISTRY

In addition to stroke prevention, improvement of symptoms and quality of life (QoL) is a primary goal in the treatment of atrial fibrillation (AF). The Atrial Fibrillation Effect on QualiTy-of-life (AFEQT) is a recently developed disease-specific QOL tool for AF. AFEQT scores were compared across

Effectiveness of case management for adult patients with chronic liver disease: a systematic review.

Review Question/Objective The objective of this systematic review is to synthesise the best available evidence on the effectiveness of case management for adult patients with chronic liver disease. Inclusion Criteria Types of participants Chronic liver disease patients This review will consider adult patients aged over 16 years, with a clinical diagnosis of CLD at any stage, including hospital-based case management participants. CLD will be defined as those who had HCV-antibody or HBsAg positive for more than six months, elevated serum alanine aminotransferase (ALT) level, clinically compensated or decompensate liver cirrhosis, hepatocellular carcinoma (HCC) either confirmed by liver histology or typical image studies. The exclusion criteria will include the following: patients with a coexisting chronic debilitating illness such as end-stage renal disease, stroke, inflammatory bowel disease, epilepsy, mental illness and malignancies other than HCC. Types of Interventions This review will consider any studies with a focus on case management interventions predominantly aimed at improving care coordination and nursing care quality of CLD patients including health education and program, social support, and integration of primary care and specialist management and disease management. This review will focus on coordination of multidisciplinary care and the integration of this with patients’ needs. We anticipate that such studies will generally have used a validated QOL tool to evaluate the effect of the case management intervention on patients’ quality of life. Types of outcomes The outcomes will include, but are not limited to: 1. Quality of care, as measured by self-designed evaluation questionnaires, e.g. awareness of disease, and satisfaction of health education, and patients’ overall satisfaction 2. Quality of life, as measured with any validated QOL instrument, such as generic (SF-36) and disease-specific scales (Chronic Liver Disease Questionnaire) of HRQOL 3. Hospitalisation costs, e.g. patients’ hospital stay

Assessment of acute and persistent pain management in patients with haemophilia

A descriptive survey was conducted in Region V-E of the United States to bridge the gap in available information on pain issues in the bleeding disorders population. The aim of this study was to a) determine language used by patients to describe and differentiate acute and persistent pain, b) describe pharmacological and non-pharmacological strategies utilized to control pain, c) determine the providers of pain management to this population and d) evaluate quality of life incorporating the SF-36 QOL tool. A total of 202 surveys were returned. For the purposes of this paper, it was decided to analyse only haemophilia data (n = 114). Average persistent daily pain levels were 5/10 (P < 0.001). The three most common word descriptors for both acute and persistent pain were the same - achy, throbbing and tender; the most utilized pain medications were NSAIDs and acetaminophen. Factor replacement was used for what respondents described as acute pain management 79% of the time and for persistent pain management 38% of the time. Participants described acute and persistent pain with the same pain descriptors leading to the conclusion that patients have difficulty distinguishing between acute and persistent pain. This lack of differentiation was further displayed by the use of factor replacement to treat persistent pain associated with arthritic discomfort (38%) which would be viewed as inappropriate, as well as lack of factor replacement use by 21% of respondents who identified pain as from an acute bleed. Opportunities exist to improve pain management through patient and provider-directed educational programs.

Quality of life tools for adult patients with cancer undergoing chemotherapy: a systematic review

Background The use of chemotherapeutic agents for treatment of cancer has expanded widely with multiple potent agents being administered at higher but more tolerable doses. The majority of these patients receive several cycles of chemotherapy over a period of months, resulting in a toxic physiologic environment that causes adverse effects. These adverse effects can lead to a significant impact on the patients’ quality of life. Despite the amount of information regarding quality of life (QoL) instruments available in the literature, no systematic review has been conducted that examined QoL instrument that consists of all four subscales of physical, psychological, social and spiritual psychometric properties using a systematic approach. Review objectives The objective of this review was to critically analyse the literature and present the best available evidence related to QoL instruments, which can be used to assess adult patients with cancer on chemotherapy for use in clinical practice. Inclusion criteria This review included randomised control trials (RCTs) and observational studies without control group related to QoL instruments used for cancer chemotherapy. The types of participants for this review included all adults with cancer over the age of 18 years old whom have undergone chemotherapy. Search strategy A three-step search strategy was utilised to search for primary research articles published in English language from January 1998 to December 2009. An initial search of MEDLINE and CINAHL was undertaken followed by analysis of the text words contained in the title and abstract, and the text terms used to describe the article. A second search strategy using all the identified keywords and the index terms was used for the 20 databases. The relevant list of all identified articles were searched for additional articles. Results A total of 3,149 references were retrieved during the initial search. Only 13 articles that had performed validation of the QoL instruments and contained the four subscales of physical, psychological, social and spiritual were included in this review. Four QoL instruments were identified. These include the City of Hope QOL - Ovarian Cancer Tool (QOL-OVCA), QOL-Breast cancer version (QOL-BC), New QOL tool India, and Quality of Life Index-Cancer version (QLI-CV). Conclusion The four QoL instruments included in this systematic review were validated comprehensively, which were feasible in clinical practice to assess patients with cancers undergoing chemotherapy. Although among the four QoL instruments, two are for specific types of cancer. Implications for practice The clinician needs to consider their specific population before selection of a suitable instrument, as not all of the identified instruments in this review are suitable for all types of cancer. The QOL-BC is breast cancer specific and QOL-OVCA is ovarian cancer specific. The QLI-CV instrument was used on patients with all types of cancer. However, male gender was absent or underrepresented with a high proportion of women with breast cancer recruited. Implications for research Future research examining the validity of the shortened versions of QOL-BC, QOL-OVCA, and QLI-CV instruments and other QoL instruments comprising the four subscales are required. The new Indian QOL tool may be useful in the clinical setting but needs further psychometric testing in different settings or languages.

Quality of life tools for adult patients with cancer undergoing chemotherapy: a systematic review.

The use of chemotherapeutic agents for treatment of cancer has expanded widely with multiple potent agents being administered at higher but more tolerable doses. The majority of these patients receive several cycles of chemotherapy over a period of months, resulting in a toxic physiologic environment that causes adverse effects. These adverse effects can lead to a significant impact on the patients' quality of life. Despite the amount of information regarding quality of life (QoL) instruments available in the literature, no systematic review has been conducted that examined QoL instrument that consists of all four subscales of physical, psychological, social and spiritual psychometric properties using a systematic approach. The objective of this review was to critically analyse the literature and present the best available evidence related to QoL instruments, which can be used to assess adult patients with cancer on chemotherapy for use in clinical practice. This review included randomised control trials (RCTs) and observational studies without control group related to QoL instruments used for cancer chemotherapy. The types of participants for this review included all adults with cancer over the age of 18 years old whom have undergone chemotherapy. A three-step search strategy was utilised to search for primary research articles published in English language from January 1998 to December 2009. An initial search of MEDLINE and CINAHL was undertaken followed by analysis of the text words contained in the title and abstract, and the text terms used to describe the article. A second search strategy using all the identified keywords and the index terms was used for the 20 databases. The relevant list of all identified articles were searched for additional articles. A total of 3,149 references were retrieved during the initial search. Only 13 articles that had performed validation of the QoL instruments and contained the four subscales of physical, psychological, social and spiritual were included in this review. Four QoL instruments were identified. These include the City of Hope QOL - Ovarian Cancer Tool (QOL-OVCA), QOL-Breast cancer version (QOL-BC), New QOL tool India, and Quality of Life Index-Cancer version (QLI-CV). The four QoL instruments included in this systematic review were validated comprehensively, which were feasible in clinical practice to assess patients with cancers undergoing chemotherapy. Although among the four QoL instruments, two are for specific types of cancer. The clinician needs to consider their specific population before selection of a suitable instrument, as not all of the identified instruments in this review are suitable for all types of cancer. The QOL-BC is breast cancer specific and QOL-OVCA is ovarian cancer specific. The QLI-CV instrument was used on patients with all types of cancer. However, male gender was absent or underrepresented with a high proportion of women with breast cancer recruited. Future research examining the validity of the shortened versions of QOL-BC, QOL-OVCA, and QLI-CV instruments and other QoL instruments comprising the four subscales are required. The new Indian QOL tool may be useful in the clinical setting but needs further psychometric testing in different settings or languages.

Quality of Life Measurement in Cancer Patients Receiving Palliative Radiotherapy for Symptomatic Lung Cancer: A Literature Review

Approximately 27% of North American cancer deaths are attributable to cancer of the lung. Many lung cancers are found at an advanced stage, rendering the tumours inoperable and the patients palliative. Common symptoms associated with palliative lung cancer include cough, hemoptysis, and dyspnea, all of which can significantly debilitate and diminish quality of life (QOL). In studies of the effects of cancer therapies, the frequent evaluative endpoints are survival and local control; however, it is imperative that clinical trials with palliative patients also have a QOL focus when a cure is unattainable. We conducted a literature review to investigate the use of QOL instrument tools in trials studying QOL or symptom palliation of primary lung cancer or lung metastases through the use of radiotherapy. We identified forty-three studies: nineteen used a QOL tool, and twenty-four examined symptom palliation without the use of a QOL instrument. The European Organization for Research and Treatment of Cancer (eortc) QLQ-C30 survey was the most commonly used QOL questionnaire (in thirteen of twenty trials). Of those thirteen studies, eight also incorporated the lung-specific QOL survey eortc QLQ-LC13 (or the eortc QLQ-LC17). A second lung-specific survey, the Functional Assessment of Cancer Therapy-Lung (fact-L) was used in only two of the twenty trials. In total, only ten of forty-three trials (23%) used a lung-specific QOL tool, suggesting that QOL was of low priority as an endpoint and that measures created for lung cancer patients are underused. We encourage investigators in future trials to include specific QOL instruments such as the eortc QLQ-LC13 or the fact-L for studies in palliative thoracic radiotherapy because those instruments provide a measure of QOL specific to patients with lung cancer or lung metastases.