Implications For Health-related Quality Of Life Research Articles

Major low anterior resection syndrome has equivalent health-related quality of life implications as having a permanent colostomy.

The literature is inconclusive when comparing health-related quality of life following restorative anterior resection (AR) compared with abdominoperineal resection (APR). Consideration of functional outcomes may explain this inconsistency. The aim of this study was to compare health-related quality of life in patients post-anterior resection, stratified by low anterior resection syndrome score, and post-abdominoperineal resection patients. A cross-sectional study of consecutive patients post APR and AR for rectal or sigmoid adenocarcinoma at a tertiary centre in Sydney, Australia (Jan 2012- Dec 2021) was performed. HRQoL outcomes (SF36v2 physical [PCS] and mental component summary [MCS] scores) were compared between APR and AR patients, with subgroup analyses stratifying AR patients according to LARS score (no/minor/major). Age- and gender-adjusted comparisons were performed by linear regression. Overall, 248 post-AR patients (57.3% male, meanage 70.8years, SD 11.6) and 64 post-APR patients (62.5% male, mean age68.1years, SD 13.1)participated. When stratified by LARS, 'major LARS' had a similar negative effect on age-and sex-adjusted PCS scores as APR. 'No LARS' (p < 0.001) and 'minor LARS' (p < 0.001) patients had higher PCS scores compared to post-APR patients. 'Major LARS' had a similarly negative effect on MCS scores compared with post-APR patients. MCS scores were higher in 'no LARS' (p = 0.006) compared with APR patients. Postoperative bowel dysfunction significantly impacts health-related quality of life. Patients with 'major LARS' have health-related quality of life as poor as those following APR. This requires consideration when counselling patients on postoperative health-related quality of life, especially where poor postoperative bowel function is anticipated following restorative surgery.

What are the current and projected future cost and health-related quality of life implications of scaling up cognitive stimulation therapy?

Cognitive stimulation therapy (CST) is one of the few non-pharmacological interventions for people living with dementia shown to be effective and cost-effective. What are the current and future cost and health-related quality of life implications of scaling-up CST to eligible new cases of dementia in England? Data from trials were combined with microsimulation and macrosimulation modelling to project future prevalence, needs and costs. Health and social costs, unpaid care costs and quality-adjusted life years (QALYs) were compared with and without scaling-up of CST and follow-on maintenance CST (MCST). Scaling-up group CST requires year-on-year increases in expenditure (mainly on staff), but these would be partially offset by reductions in health and care costs. Unpaid care costs would increase. Scaling-up MCST would also require additional expenditure, but without generating savings elsewhere. There would be improvements in general cognitive functioning and health-related quality of life, summarised in terms of QALY gains. Cost per QALY for CST alone would increase from £12,596 in 2015 to £19,573 by 2040, which is below the threshold for cost-effectiveness used by the National Institute for Health and Care Excellence (NICE). Cost per QALY for CST and MCST combined would grow from £19,883 in 2015 to £30,906 by 2040, making it less likely to be recommended by NICE on cost-effectiveness grounds. Scaling-up CST England for people with incident dementia can improve lives in an affordable, cost-effective manner. Adding MCST also improves health-related quality of life, but the economic evidence is less compelling.

Health-related quality of life in Norwegian adults with Fabry disease: Disease severity, pain, fatigue and psychological distress.

Health‐related quality of life (HRQOL) is reduced in Fabry disease (FD) and associated with clinical disease manifestations, but few have used Fabry‐specific severity scores to study how disease burden interferes with quality of life. We investigated how the Fabry DS3, consisting of four somatic domains and one patient‐reported item, associates with HRQOL, while also evaluating fatigue, pain and psychological distress as possible predictors. Thirty‐six adults with FD completed the Short‐form Health Survey (SF‐36), the hospital anxiety and depression scale (HADS), the brief pain inventory (BPI) and reported fatigue on a visual analog scale. Clinical data were collected from the last multidisciplinary hospital visit. Using correlation and hierarchical linear regression analyses, we examined associations between demographic, clinical and self‐reported predictors and the SF‐36 physical (PCS) and mental (MCS) component summary scores. Males scored lower than the general population in all SF‐36 domains (P < .05). General health and social functioning were reduced in females. Before including self‐reported symptom scores, DS3 showed associations with PCS (P = .009). Our fully adjusted model explained 66% of the variation in PCS, where education (P = .040) and fatigue (P = .002) retained significance. With HADS depression score (P = .001) as the sole significant factor, our regression model explained 56% of the variation in MCS. The DS3 score has implications for HRQOL in FD. Low education and fatigue represent major barriers to physical well‐being, while depression strongly influences mental quality of life. Fatigue should be recognized as an important endpoint in future FD trials. Increased efforts to diagnose and treat affective disorders are warranted.

Illness identity in young adults with refractory epilepsy

IntroductionRefractory epilepsy is an intrusive condition with important implications for daily functioning in emerging and young adulthood. The present study examined the degree to which refractory epilepsy is integrated in one's identity, and examined how such a sense of illness identity was related to health-related quality of life (HRQOL). MethodsA total of 121 18- to 40-year-old patients with refractory epilepsy (56.2% women) completed self-report questionnaires assessing the four illness identity states of acceptance, enrichment, engulfment, and rejection (Illness Identity Questionnaire (IIQ)); HRQOL (Quality of Life in Epilepsy Inventory – 31); and seizure frequency and severity (Liverpool Seizure Severity Scale (LSSS)). Illness identity scores were compared with a sample of 191 patients with a nonneurological chronic disease (congenital heart disease). Hierarchical regression analyses were conducted to assess the predictive value of illness identity for HRQOL when simultaneously controlling for demographic and clinical features. ResultsPatients with refractory epilepsy scored higher on rejection and engulfment and lower on acceptance when compared with patients with congenital heart disease. Further, seizure severity and number of medication side-effects were positively related to engulfment and negatively to acceptance. Finally, when simultaneously controlling for various demographic and clinical variables, illness identity significantly predicted HRQOL (with engulfment being the strongest and most consistent predictor). ConclusionThe extent to which patients with refractory epilepsy succeed in integrating their illness into their identity may have important implications for HRQOL. Clinicians should be especially attentive for signs that patients feel engulfed by their epilepsy.

Sleep quality subtypes predict health-related quality of life in children

ObjectiveThis paper aimed to investigate whether distinct sleep quality subtypes predicted health-related quality of life in a nonclinical sample of children. MethodsThis paper utilized data from two waves of the Longitudinal Study of Australian Children, a cohort study that follows a representative population of children in Australia. This paper examined data from Waves 4 and 5 of the LSAC (covering the period 2010–2012) and included 3974 children aged 10–11 years at Wave 4 (51.4% male). Multiple dimensions of sleep quality were assessed using a combination of child- and parent-reported measures. Health-related quality of life (HRQOL) was assessed through the Pediatric Quality of Life Inventory. ResultsLatent class analysis indicated six distinct sleep quality classes in children, namely good sleep, moderate sleep quality, mild sleep disturbances, short sleep, long sleep, and disordered sleep. In general, the disordered sleep and minor sleep disturbance classes had poorer HRQOL, which worsened over time. The long sleep and moderate sleep quality classes also showed some decreases in HRQOL over time. ConclusionsThis study demonstrates that there are distinct sleep quality subtypes in children that could have implications for HRQOL. These findings may inform future strategies to promote improved sleep and HRQOL in children.

An integrative review of health-related quality of life in patients with critical limb ischaemia.

To examine the domains and the domain-specific characteristics within a peripheral arterial disease health-related quality of life framework for their usefulness in defining critical limb ischaemia health-related quality of life. Critical Limb Ischaemia presents a highly individualised set of personal and health circumstances. Treatment options include conservative management, revascularisation or amputation. However, the links between treatment decisions and quality of life require further investigation. The framework for this integrative review was the peripheral arterial disease-specific health-related quality of life domains identified by Treat-Jacobson etal. The literature expanded and refined Treat-Jacobson's framework by modifying the characteristics to better describe health-related quality of life in critical limb ischaemia. Given that critical limb ischaemia is a highly individualised situation with powerful health-related quality of life implications, further research focusing on patient and family-centred decision-making relating to therapeutic options and advanced care planning is required. A critical limb ischaemia-specific, health-related quality of life tool is required to capture both the unique characteristics of this disorder, and the outcomes for active or conservative care among this complex group of patients.

The impact of neurocognitive function on health utility scores (HUS) in Stage 4 (S4) lung cancer patients (pts) with and without brain metastases (BrM).

225 Background: As targeted therapies for S4LC pts have improved survival, the impact of health-related quality of life (HRQoL) in these pts grows in importance. In pts with BrM, loss of NCF may affect HRQoL significantly. We evaluated the relationship between NCF and HUS as a measure of HRQoL in S4LC pts. Methods: Self-reported HUS data from EQ5D-3L were obtained cross-sectionally from S4LC pts with (BrM) or without BrM (non-BrM). NCF was measured using the Hopkins Verbal Learning Test – Revised (HVLT-R), the Controlled Oral Word Association Test (COWAT) and Trail Making Tests (TMT-A/B). NCF scores were correlated with HUS (Pearson Coefficient, R). Results: BrM (n = 54) and non-BrM (n = 40) patients had similar demographics- overall median age was 61 (range 33-89) years; 59% were female; 45% had EGFR/ALK alterations; BrM pts were treated with whole brain (n = 20), stereotactic radiation (n = 19), both (n = 6), or sole use of systemic agents (n = 6); 3 were observed; 7 had BrM resection. Overall HUS were similar between BrM and non-BrM groups (mean HUS (mHUS): 0.77 vs. 0.78; p = 0.86). However, pts with stable brain disease had higher HUS than those with progressive brain disease (mHUS: 0.80 (n = 36) vs 0.69 (n = 17); p = 0.045). There was a trend towards lower HUS in symptomatic vs. asymptomatic BrM (mHUS: 0.70 (n = 10) vs. 0.78 (n = 43); p = 0.07). Multiple correlations between NCF scores and HUS were found. HLVT-Total Recall correlated with HUS in BrM but not non-BrM (R=0.35, p = 0.01; vs. non- R=0.04, p = 0.84 respectively) as did the HLVT-Recognition (BrM: R=0.32, p = 0.03 vs. non-BrM: R=0.13, p = 0.51). In contrast, TMT-A/B were associated with HUS in both BrM (p = 0.03, 0.06) and non-BrM pts (p = 0.001, 0.03). COWAT was associated with HUS only when all pts were analyzed together (p = 0.04). Conclusions: In S4LC pts, HUS were correlated with multiple measures of NCF. The impact of uncontrolled brain disease and poor NCF on HUS demonstrates that this measure has clinical utility, with important HRQoL implications as metastatic lung cancer pts live longer.

Pressure Pain Threshold and Oral Health-Related Quality of Life Implications of Patients With Alloplastic Temporomandibular Joint Replacement—A Prospective Study

Alloplastic total temporomandibular joint replacement (TJR) for end-stage disease, congenital disorders, and after ablative surgery has been shown improve function and to decrease pain. The purpose of this study was to evaluate the pain pressure threshold (PPT) and oral health-related quality of life (OHRQoL) in patients undergoing alloplastic TJR. Subjects requiring TJR from May 2007 through February 2011 were enrolled in the study. The PPT and OHRQoL were measured preoperatively and 2, 6, and 12 months postoperatively. The primary predictor variable was postoperative time (preoperatively and 2, 6, and 12 months postoperatively). The primary outcome variables were the PPT and OHRQoL. Seventeen subjects requiring TJR were enrolled in and completed the required 12-month follow-up. There was no difference in the PPT at any time point. There was a significant improvement in the OHRQoL domain of psychological discomfort (P = .04) at 12 months. Facial pain intensity, temporomandibular joint pain, mandibular function, and diet were also significantly improved at 12 months (P = .001). Alloplastic TJR appears to decrease pain, improve function and diet, and decrease psychological discomfort.

Amblyopia and quality of life: a systematic review.

Amblyopia is a common condition, which can affect up to 5% of the general population. Health-related quality-of-life (HRQoL) implications of amblyopia and/or its treatment have been explored in the literature. A systematic literature search was undertaken during the period of 7-14 May 2010 to identify the HRQoL implications of amblyopia and/or its treatment. A total of 35 papers were included in the literature review. The HRQoL implications of amblyopia related specifically to amblyopia treatment, rather than to the condition itself. These included impact on family life, social interactions, difficulties in undertaking daily activities, as well as feelings and behaviour. The identified studies adopted a number of methodologies. The study populations included children with the condition, parents of children with amblyopia, and adults who had undertaken amblyopia treatment as a child. Some studies developed their own measures of HRQoL, and others determined HRQoL through proxy measures. The reported findings of the HRQoL implications are of importance when considering the management of cases of amblyopia. The issues identified in the literature review are discussed with respect to how HRQoL is measured (treatment compliance vs proxy measures), and whether HRQoL is taken from a child's or a parent's perspective. Changing societal views over glasses and occlusion therapy are also discussed. Further research is required to assess the immediate and long-term effects of amblyopia and/or its treatment on HRQoL using a more standardised approach.

C-C4-02: Improving Survivorship Care for Long-Term Colorectal Cancer Survivors: Key Findings of a 5-Year Study

Aims: Understand the determinants of health related quality of life (HRQOL) and the lived experiences among colorectal cancer (CRC) survivors, and identify strategies to help maintain or enhance CRC survivors’ HRQOL. Methods: Mail survey and focus groups. Subjects were 283 ostomy and 392 anastomosis long-term CRC survivors within an HMO. Focus groups for subjects with ostomy were divided by gender and high and low HRQOL. Outcome measures were the modified City of Hope Quality of Life (mCOH-QOL)-Ostomy (abridged for anastomosis) and SF-36v2 questionnaires. The SF-6D scoring algorithm was used to calculate an overall HRQOL score from SF-36v2 data. Focus groups were conducted to explore ostomy-related barriers to effective self-care and adaptation strategies. Results: CRC survivors with an ostomy experienced multiple persistent HRQOL losses that differ between men and women. Women CRC survivors with ostomies, for example, reported more sleep disruption and fatigue than men. Living with an ostomy, co-morbidities, socioeconomic status, self-reported depression, and employment status were independent predictors of SF-6D scores. Among CRC survivors with ostomy, fistulas had important implications for HRQOL. Psychological wellbeing among CRC survivors was positively associated with income. Intestinal stomas significantly influenced spiritual HRQOL. Provision or withdrawal of a partners’ support affected both short- and long-term psychosocial adjustment of female CRC ostomy patients. Focus group participants identified dietary changes to control bowel output and odor, demands of coping and adjustment, and the time it took to accept the reality of daily living with an ostomy as significant challenges. Conclusions: The greatest challenges reported by CRC survivors confirmed the IOMs findings that survivorship is a distinct, chronic phase of cancer care, and that cancer effects are broad and pervasive. CRC survivors could benefit from dietary and behavioral interventions even 5+ years after their cancer surgery. Women with ostomies seem to do worse than men with ostomies and report a different profile of HRQOL challenges, including sleep disruption and fatigue. Depression screening and psychosocial interventions should be part of survivorship care for CRC patients. CRC survivors should be assessed for income and financial need. Survivorship care should aim at minimizing hospitalizations, depression, and ostomy-related complications among long- term CRC survivors.

Insulin Pump Therapy and Health-Related Quality of Life in Children and Adolescents with Type 1 Diabetes

To compare the health-related quality of life (HRQOL) of youths on injection regimens to those prescribed insulin pump therapy and examine factors related to HRQOL in youths with type 1 diabetes. An ethnically diverse group of youths (n = 160, ages 5-17 years) with type 1 diabetes and their caretakers completed family, parent, and child adjustment measures, as well as measures of generic- and disease-specific HRQOL. Metabolic control and regimen information were assessed through medical records. HRQOL was unrelated to regimen prescription. Child, family, and parent adjustment variables were significantly related to HRQOL, whereas other demographic and clinical variables were relatively less important. Present findings indicate that insulin pump therapy does not have negative implications for HRQOL. They also suggest that interventions aiming to improve HRQOL in this population should target child, parent, and family adjustment and not focus solely on disease-related outcomes.

Quality of life in preschool children born preterm

The relationship of preterm birth to health-related quality of life (HRQoL) was examined for children aged 1 to 4 years. Three gestational age groups with a NICU history were selected, <32 weeks (n=65), 32 to 36 weeks (n=41), 237 weeks (n=54), and a reference group from the open population (n=50). The main instrument was the TNO-AZL Preschool Quality Of Life (TAPQOL) questionnaire, which was completed by the parents. In addition, other outcome measures obtained from parents or neonatologists were investigated. Children born <32 weeks had significantly lower HRQoL than the reference group in the scales for lungs, stomach, eating disorders, motor functioning, communication, and anxiety. Parental feelings towards the child were related to the child's HRQoL. We found differences between the neonatologists' and parents' perceptions of the children's situation, which can have clinical consequences (e.g. different opinions about what needed treatment). Neonatal intensive care after birth has HRQoL implications for all children, particularly in children born at <32 weeks of gestation.