Quality of Life Research

Oral health-related quality of life of patients after heart transplantation and those with heart failure is associated with general health-related quality of life: a cross-sectional study Abstract Purpose The aim of this cross-sectional study was to examine the oral health-related quality of life (OHRQoL) in patients after heart transplantation (HTx) and those with heart failure (HF). Methods In total, 186 participants (HTx: 104, HF: 82) were recruited from the University Department for Cardiac Surgery, Leipzig Heart Centre, Germany. OHRQoL was assessed with the German short form of the oral health impact profile (OHIP-G14). Health-related quality of life (HRQoL) was evaluated using the short form 36 survey (SF-36). Furthermore, the dental and periodontal treatment need was recorded. Results With an OHIP-G14 sum score of 6.58 ± 6.40 [5; 2.5–8] in the HTx group and 5.54 ± 5.47 [5; 2–7] in the HF group, no clinically relevant or statistically significant difference was apparent (p = 0.39). The SF-36 scales for physical functioning, role-physical, general health and vitality were significantly worse in the HF group compared with the HTx group (pi < 0.01). A worse SF-36 physical component summary was significantly associated with a higher OHIP-G14 sum score (HTx: p < 0.01, HF: p = 0.04). In the HTx group, a significant association was also observed for the mental component summary (p < 0.01). Multiple regression analysis revealed physical component summary (p = 0.04) and mental component summary (p < 0.01) in HTx, and physical component summary (p = 0.02), mental component summary (p = 0.02) and smoking (p < 0.01) as significant predictors for OHIP G14 in HF. Conclusion The OHRQoL in HF and HTx patients appears to be mainly associated with general HRQoL. Therefore, multidisciplinary dental care concepts may be recommended to improve oral health conditions in these patients.

Qualitative study of patients with venous malformations: symptom experiences and content validity of patient-reported outcome measures Abstract Purpose To determine important symptoms and functional effects of venous malformations (VMs) to assess the content validity of commonly used patient-reported outcome (PRO) measures for use with VM patients. Methods This cross-sectional, qualitative study involved cognitive interviews with participants with VM aged ≥ 14 years. From February to June 2016, 11 participants (8 female) with a mean (± standard deviation) age of 31 ± 15 years were recruited from three clinical sites. The following subgroups were evaluated: 5 adults (aged ≥ 18) with trunk/extremity VMs; 3 adolescents (aged 14–17) with trunk/extremity VMs; and 3 adults with head/neck VMs. We evaluated the content validity of the Worst Pain Numeric Rating Scale (NRS), Patient-Reported Outcomes Measurement Information System (PROMIS®) Pain Interference 8-item short form, and PROMIS Physical Function 8-item short form. Results The most common participant-reported VM symptoms were swelling (n = 10), skin discoloration (n = 8), acute episodic pain (n = 8), chronic pain (n = 7), numbness (n = 7), and tingling/burning (n = 6). Participants reported that VMs affected their physical function (n = 10), appearance (n = 10), relationships/social activities (n = 7), and emotional health (n = 3). The Worst Pain NRS and PROMIS Pain Interference measures were relevant to all participants’ VM experience. Only adults with head/neck VMs found the PROMIS Physical Function measure to be irrelevant. The assessed PRO measures did not address several symptoms commonly reported by VM patients (swelling, skin discoloration, numbness, and appearance). Conclusion These results suggest that several VM symptoms are not assessed fully by commonly used PRO measures, and that the relevance of functional limitation questions may vary by VM location.

Association between frailty and family functionality on health-related quality of life in older adults Abstract Objectives To investigate the longitudinal association between frailty and health-related quality of life (HRQoL) in older adults and to examine whether family functionality moderates the association between frailty and HRQoL. Methods It’s a longitudinal observational study. The sample was drawn from three waves (2006, 2010, and 2015) of the Health, Well-Being, and Aging Study (Saúde, bem-estar e envelhecimento; SABE) collected in São Paulo, Brazil with adults aged 60 years and older. HRQoL was based on the Short Form (SF-12) Health Survey, from which the physical component score (PCS) and mental component score (MCS) were obtained. Frailty status was determined according to the Fried frailty criteria. Family support was measured using the family APGAR instrument. Mixed effects linear regression was used to determine the associations of frailty on longitudinal changes in HRQoL and to examine whether family functionality attenuates this association. Results Being frail was negatively associated with MCS and PCS scores. Familiar functionality was found to be a protective factor for MCS only. Conclusions These findings are innovative and make an important contribution to the study of HRQoL among older adults in developing countries.

Health-related quality of life of transplant recipients: a comparison between lung, kidney, heart, and liver recipients Abstract Background Quality of life and psychological responses to transplantation are constructs used to assess various psychosocial aspects after organ transplantation. The purpose of this study is to compare physical, psychological, social, and environmental quality of life between recipients of four organs: liver, lung, heart, and kidney. Methods In order to compare the four types of quality of life and emotional responses post-transplant, HRQOL and TxEQ questionnaires were administered to 427 transplant recipients. Results Heart and liver recipients report significantly higher health-related quality of life than lung and kidney recipients. Heart and lung patients report significantly fewer concerns and worries than liver and kidney patients. New additional variables were explored in our study: psychological connection to the living donor/deceased donor's family and commitment to them. We also found that heart recipients feel their personality traits changed, postoperative. Conclusions The contribution of our study was the finding that ethno-religious and psychosocial variables have a positive effect on four dimensions of HRQOL. It may be useful to design psychological support interventions specifically adapted to patients after organ transplantation that aim at enhancing patients' HRQOL and alleviating negative emotional responses.

Changes in quality of life and sleep across the perinatal period in women with mood disorders Abstract Introduction The perinatal period represents a time of significant life changes associated with increases in sleep difficulties, depression, and potentially impaired quality of life (QoL). Associations between QoL and sleep among women with perinatal depression are poorly understood, and changes in QoL across the perinatal period have received little attention. Methods Participants were the treatment-as-usual group (n = 23) from a clinical trial testing an intervention for perinatal mood disorders. They completed the WHOQOL-Bref, had depression assessed with the HAM-D-17, and wore wrist actigraphs to estimate sleep for 1 week during third trimester and at 6 weeks postpartum. Results Higher education level was associated with better environmental QoL during pregnancy (p = .044) and presence of older children was associated with worse social QoL postpartum (p = .045). Psychological health QoL worsened (p = .014) across the perinatal period. Total sleep time (p = .001) and sleep efficiency (p = .008) decreased from third trimester to postpartum week 6, but sleep measures were not associated with QoL at either time point. Depressive symptoms decreased from pregnancy to postpartum week 6 and were inversely associated with postpartum physical and social QoL (p = .031 and .048). Discussion Factors contributing to self-rated QoL are variable across multiple domains during the perinatal period. QoL among our participants was lower than population norms. In our sample of women with depression and/or anxiety, QoL was related to postpartum depressive symptoms, but not to objectively measured sleep quality, quantity, or timing. Links between QoL and sleep may be inherently complex in perinatal women.

Health-related quality of life in Egyptian children with nephrotic syndrome Abstract Purpose This research aimed to evaluate Quality of life (QoL) in Egyptian children with idiopathic Nephrotic syndrome (INS) in comparison to healthy children and children with chronic non-renal illnesses. Methods In this questionnaire-based study, 300 children were included, 100 with INS and 2 matched control groups: healthy group, and chronic non-renal illness group. QoL was assessed using the Pediatric Quality of Life Inventory (PedsQL™ 4.0 Generic Core Scales) and the Generic Children’s QoL Measure (GCQ). Results All mean scores of PedsQL domains in INS group were significantly higher than chronic non-renal illness group and significantly lower than the healthy control group (p =  < 0.001) for all and similar results reported also regarding GCQ scores in INS compared to diseased (p = 0.02) and healthy controls (p = 0.006). Steroid-resistant NS group had lowest scores in all domains (p =  < 0.001) compared to other clinical phenotypes of NS group. The long duration of illness, higher number of relapses, high cumulative steroid dose, and high number of medications used were associated with lower PedsQL and GCQ scores (p < 0.001 for all) Conclusion This is the first study to asses QoL in Egyptian children with INS and correlates QoL scores to clinical phenotypes and complications of the disease. Egyptian children with INS need strenuous efforts from pediatricians and psychiatrists to improve QoL. Both PedsQL™ 4.0 scale and GCQ are simple, convenient, and can be used in daily clinical practice to asses QoL in children with NS.

Whom should we ask? A systematic literature review of the arguments regarding the most accurate source of information for valuation of health states Abstract Purpose To determine and critically evaluate the arguments in the published literature regarding the most accurate source of information for valuation of health states: values based on experienced health states (patient values) or values based on described health states (general public values).

Modelling a preference-based index for EQ-5D-3L and EQ-5D-3L + Sleep using a Bayesian framework Abstract Background Conventionally, frequentist approach has been used to model health state valuation data. Recently, researchers started to explore the use of Bayesian methods in this area. Objectives This paper presents an alternative approach to modelling health state valuation data of the EQ-5D-3L and EQ-5D-3L + Sleep descriptive systems, using a Bayesian framework, and demonstrates its superiority to conventional frequentist methods. Methods The valuation study is composed of 18 EQ-5D-3L health states and 18 EQ-5D-3L + Sleep health states valued by 160 members of the general public in South Yorkshire, UK, using the time tradeo-ff technique. Three different models were developed for EQ-5D-3L and EQ-5D-3L + Sleep accordingly using Bayesian Markov chain Monte Carlo simulation methods. Bayesian methods were applied to models fitted included a linear regression, random effect and random effect with covariates. The models are compared based on their predictive performance using mean predictions, root mean squared error (RMSE) and deviance information criterion (DIC). All analyses were performed using Bayesian Markov chain Monte Carlo simulation methods. Results The random effects with covariates model performs best under all criterions for the two preference-based measures, with RMSE (0.037) and DIC (637.5) for EQ-5D-3L and RMSE (0.019), DIC (416.4) for EQ-5D + Sleep. Compared with models previously estimated using frequentist approach, the Bayesian models reported in this paper provided better predictions of observed values. Conclusion Bayesian methods provide a better way to model EQ-5D-3L valuation data with and without a sleep ‘bolt-on’ and provide a more flexible in characterizing the full range of uncertainty inherent in these estimates.

Development of a tool to assess oral health-related quality of life in patients hospitalised in critical care Abstract Aims and objectives Oral health deteriorates following hospitalisation in critical care units (CCU) but there are no validated measures to assess effects on oral health-related quality of life (OHQoL). The objectives of this study were (i) to develop a tool (CCU-OHQoL) to assess OHQoL amongst patients admitted to CCU, (ii) to collect data to analyse the validity, reliability and acceptability of the CCU-OHQoL tool and (iii) to investigate patient-reported outcome measures of OHQoL in patients hospitalised in a CCU. Methods The project included three phases: (1) the development of an initial questionnaire informed by a literature review and expert panel, (2) testing of the tool in CCU (n = 18) followed by semi-structured interviews to assess acceptability, face and content validity and (3) final tool modification and testing of CCU-OHQoL questionnaire to assess validity and reliability. Results The CCU-OHQoL showed good face and content validity and was quick to administer. Cronbach’s alpha was 0.72 suggesting good internal consistency. For construct validity, the CCU-OHQoL was strongly and significantly correlated (correlation coefficients 0.71, 0.62 and 0.77, p < 0.01) with global OHQoL items. In the validation study, 37.8% of the participants reported a deterioration in self-reported oral health after CCU admission. Finally, 26.9% and 31% of the participants reported considerable negative impacts of oral health in their life overall and quality of life, respectively. Conclusions The new CCU-OHQoL tool may be of use in the assessment of oral health-related quality of life in CCU patients. Deterioration of OHQoL seems to be common in CCU patients.

Strategies to improve patient-reported outcome completion rates in longitudinal studies Abstract Purpose The quality of patient-reported outcome (PRO) data can be compromised by non-response (NR) to scheduled questionnaires, particularly if reasons for NR are related to health problems, which may lead to unintended bias. The aim was to investigate whether electronic reminders and real-time monitoring improve PRO completion rate. Methods The population-based study “Quality of life in Danish multiple myeloma patients” is a longitudinal, multicentre study with consecutive inclusion of treatment-demanding newly diagnosed or relapsed patients with multiple myeloma. Education of study nurses in the avoidance of NR, electronic reminders, 7-day response windows and real-time monitoring of NR were integrated in the study. Patients complete PRO assessments at study entry and at 12 follow-up time points using electronic or paper questionnaires. The effect of the electronic reminders and real-time monitoring were investigated by comparison of proportions of completed questionnaires before and after each intervention. Results The first 271 included patients were analysed; of those, 249 (85%) chose electronic questionnaires. Eighty-four percent of the 1441 scheduled PRO assessments were completed within the 7-day response window and 11% after real-time monitoring, achieving a final PRO completion rate of 95%. A significant higher proportion of uncompleted questionnaires were completed after the patients had received the electronic reminder and after real-time monitoring. Conclusions Electronic reminders and real-time monitoring contributed to a very high completion rate in the study. To increase the quality of PRO data, we propose integrating these strategies in PRO studies, however highlighting that an increase in staff resources is required for implementation.