Patient-centered Quality Of Life Research Articles

Investigating the Comparative Effectiveness of Place-Based and Scatter-Site Permanent Supportive Housing for People Experiencing Homelessness During the COVID-19 Pandemic: Protocols for a Mixed Methods, Prospective Longitudinal Study.

Permanent supportive housing (PSH) is an evidence-based practice to address homelessness that is implemented using 2 distinct approaches. The first approach is place-based PSH (PB-PSH), or single-site housing placement, in which an entire building with on-site services is designated for people experiencing homelessness. The second approach is scatter-site PSH (SS-PSH), which uses apartments rented from a private landlord while providing mobile case management services. This paper describes the protocols for a mixed methods comparative effectiveness study of 2 distinct approaches to implementing PSH and the patient-centered quality of life, health care use, and health behaviors that reduce COVID-19 risk. People experiencing homelessness who are placed in either PB-PSH or SS-PSH completed 6 monthly surveys after move-in using smartphones provided by the study team. A subsample of participants completed 3 qualitative interviews at baseline, 3 months, and 6 months that included photo elicitation interviewing. Two stakeholder advisory groups, including one featuring people with lived experience of homelessness, helped guide study decisions and interpretations of findings. Study recruitment was supposed to occur over 6 months starting in January 2021 but was extended due to delays in recruitment. These delays included COVID-19 delays (eg, recruitment sites shut down due to outbreaks and study team members testing positive) and delays that may have been indirectly related to the COVID-19 pandemic, including high staff turnover or recruitment sites having competing priorities. In end-July 2022, in total, 641 people experiencing homelessness had been referred from 26 partnering recruitment sites, and 563 people experiencing homelessness had enrolled in the study and completed a baseline demographic survey. Of the 563 participants in the study, 452 had recently moved into the housing when they enrolled, with 272 placed in PB-PSH and 180 placed in SS-PSH. Another 111 participants were approved but are still waiting for housing placement. To date, 49 participants have been lost to follow-up, and 12% of phones (70 of the initial 563 distributed) were reported lost by participants. Recruitment during the pandemic, while successful, was challenging given that in-person contact was not permitted at times either by program sites or the research institutions during COVID-19 surges and high community transmission, which particularly affected homelessness programs in Los Angeles County. To overcome recruitment challenges, flexible strategies were used, which included extending the recruitment period and the distribution of cell phones with paid data plans. Given current recruitment numbers and retention rates that are over 90%, the study will be able to address a gap in the literature by considering the comparative effectiveness of PB-PSH versus SS-PSH on patient-centered quality of life, health care use, and health behaviors that reduce COVID-19 risk, which can influence future public health approaches to homelessness and infectious diseases. ClinicalTrials.gov NCT04769349; https://clinicaltrials.gov/ct2/show/NCT04769349. DERR1-10.2196/46782.

Comparing Quality of Life in Type 2 Diabetic Patients Using Dulaglutide and Liraglutide

Background and Aims: WHO has defined quality of life as individuals perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. The quality of life evaluation is seen as an important aspect of care of diabetes mellitus 1. In this context it is imperative to study how new agents will affect the quality of life. In this study we have compared the quality of life of patients using dulaglutide and liraglutide. Deign and Method: We have used a simple self-administered patient centered quality of life (PCQoL) measure that is based on general and diabetes related life. This tool has shown to strongly correlate with the established reference scorings system, diabetes related quality of life (DQoL) score, developed for the Diabetes Control and Complications Trial 2,3. Sixty eligible patients on oral hypoglycaemic agents and Dulaglutide (N:30) or Liraglutide (N:30) formed the study group. All study subjects were on steady dose of GLP 1 RA for at least six months before they took two part quality of life (general and diabetes related) questionnaire during their hospital visit. In each part, subjects nominated five facets of life, judged to be important to them for quality of life (most important rated 5). Each aspect was then weighted by the patient for their current level of satisfaction on a five-point Likert scale (5, completely satisfied; 1, not at all satisfied), and a total score was calculated. Groups were matched for for age, sex, diabetes duration, comorbidities and HbA1C. The means were compared with Student’s t test.Results: The quality of life scores were better for dulaglutide than for liraglutide treated subjects (mean [SD] PCQoL: 66 [61–70] vs 56 [52 - 60], p < 0.05).Discussion: In the diabetes management strategy, a primary therapeutic goal is to address and better the quality of life. In this study we have established that once weekly Dulaglutide offers better quality of life than daily injections of Liraglutide. PCQoL is a patient centered quality of life measurement is quick, simple, repeatable, sensitive, and valid in type 2 diabetes mellitus.

Surgery for degenerative cervical myelopathy: a patient-centered quality of life and health economic evaluation

Background ContextDegenerative cervical myelopathy (DCM) represents the most common cause of non-traumatic spinal cord impairment in adults. Surgery has been shown to improve neurologic symptoms and functional status, but it is costly. As sustainability concerns in the field of health care rise, the value of care has come to the forefront of policy decision-making. Evidence for both health-related quality of life outcomes and financial expenditures is needed to inform resource allocation decisions. PurposeThis study aimed to estimate the lifetime incremental cost-utility of surgical treatment for DCM. Design/SettingThis is a prospective observational cohort study at a Canadian tertiary care facility. Patient SampleWe recruited all patients undergoing surgery for DCM at a single center between 2005 and 2011 who were enrolled in either the AOSpine Cervical Spondylotic Myelopathy (CSM)-North America study or the AOSpine CSM-International study. Outcome MeasuresHealth utility was measured at baseline and at 6, 12, and 24 months following surgery using the Short Form-6D (SF-6D) health utility score. Resource expenditures were calculated on an individual level, from the hospital payer perspective over the 24-month follow-up period. All costs were obtained from a micro-cost database maintained by the institutional finance department and reported in Canadian dollars, inflated to January 2015 values. MethodsQuality-adjusted life year (QALY) gains for the study period were determined using an area under the curve calculation with a linear interpolation estimate. Lifetime incremental cost-to-utility ratios (ICUR) for surgery were estimated using a Markov state transition model. Structural uncertainty arising from lifetime extrapolation and the single-arm cohort design of the study were accounted for by constructing two models. The first included a highly conservative assumption that individuals undergoing nonoperative management would not experience any lifetime neurologic decline. This constraint was relaxed in the second model to permit more general parameters based on the established natural history. Deterministic and probabilistic sensitivity analyses were employed to account for parameter uncertainty. All QALY gains and costs were discounted at a base of 3% per annum. Statistical significance was set at the .05 level. ResultsThe analysis included 171 patients; follow-up was 96.5%. Mean age was 58.2±12.0 years and baseline health utility was 0.56±0.14. Mean QALY gained over the 24-month study period was 0.139 (95% confidence interval: 0.109–0.170, p<.001) and the mean 2-year cost of treatment was $19,217.82±12,404.23. Cost associated with the operation comprised 65.7% of the total. The remainder was apportioned over presurgical preparation and postsurgical recovery. Three patients required a reoperation over the 2-year follow-up period. The costs of revision surgery represented 1.85% of the total costs. Using the conservative model structure, the estimated lifetime ICUR of surgical intervention was $20,547.84/QALY gained, with 94.7% of estimates falling within the World Health Organization definition of “very cost-effective” ($54,000 CAD). Using the more general model structure, the estimated lifetime ICUR of surgical intervention was $11,496.02/QALY gained, with 97.9% of estimates meeting the criteria to be considered “very cost-effective.” ConclusionsSurgery for DCM is associated with a significant quality of life improvement. The intervention is cost-effective and, from the perspective of the hospital payer, should be supported.

Food as medicine: A randomized controlled trial (RCT) of home delivered, medically tailored meals (HDMTM) on quality of life (QoL) in metastatic lung and non-colorectal GI cancer patients.

155 Background: Malnutrition incidence in cancer approaches 85%, disproportionately burdening those with lung, GI, and advanced stage cancers. Malnourished patients have impaired chemotherapy response, shorter survival, longer hospital stays, and decreased QoL. Home delivered meals are nutritional interventions that improve patient well-being, nutrition, and lower healthcare costs in the elderly but have not been studied as an intervention in cancer patients. HDMTM are nutritionist prescribed home delivered meals tailored to patient’s symptoms, co-morbidities, and health needs. Preliminary data in 211 cancer patients showed with HDMTM 87% ate more than half of meals, 91% lived more independently, 89% ate more nutritiously, and 70% had less fatigue. HDMTM may be a strategy to reduce financial toxicity and healthcare utilization and improve QoL in cancer patients, but no primary data exists evaluating its efficacy. Methods: We sought to develop the first RCT evaluating patient-centered QoL improvement from nutritional intervention with HDMTM in those with metastatic lung and non-colorectal GI cancer. We established a partnership with God’s Love We Deliver, a 501c3 non-profit specializing in HDMTM. Results: We developed a protocol for a single-institution RCT of standard of care (SoC) versus SoC and HDMTM in metastatic lung and non-colorectal GI cancer patients with primary aim comparing QoL between arms at 12 weeks using the FACT-G questionnaire. Sample size is 180. Secondary aims assess HDMTM’s impact on nutritional status, weight, mood, survival, food security, financial toxicity, healthcare utilization, and cost effectiveness. Eligible patients tolerate oral alimentation, have PS 0-3, and newly diagnosed (&lt; 6 weeks) metastatic cancer. All patients have pre-randomization nutritional evaluation by an oncologic dietician. Conclusions: We present the first PRMC reviewed and IRB approved RCT evaluating the efficacy of HDMTM in metastatic cancer patients with primary endpoint of patient reported QoL. Investigating HDMTM expands our knowledge of nutrition as an effective arm of palliative oncology.

Surgery for Degenerative Cervical Myelopathy: A Patient-Centered Quality of Life and Health Economic Evaluation

Surgery for Degenerative Cervical Myelopathy: A Patient-Centered Quality of Life and Health Economic Evaluation

Abstract 1433: A mobile app for health related quality of life and symptom assessment in patients with primary brain tumors in an outpatient oncology clinic

Abstract Purpose: Primary brain tumors, and their treatments, can have a significant impact on patient quality of life due to altered mentation, mood changes, memory loss, and neurologic deficits. It has therefore been suggested that patient related outcomes need to be included as endpoints for treatment efficacy. The objective of this project was to develop and evaluate a mobile application (GlioNCI), in reporting health-related quality of life measures and symptom scoring in patients with primary brain tumors treated and followed in an outpatient oncology clinic. Experimental Procedures and Results: Apple's Xcode Integrated Development Environment (IDE) was used to develop GlioNCI using the Swift programming language. The parameters and scores chosen had previously been validated in primary CNS tumors. Medication and steroid use is captured at each encounter, as are seizure characteristics, frequency and management. Health related quality of life questionnaires included portions of the EORTC QLQ-C30, and EORTC QLQ-BN20, and MD Anderson Symptom Inventory Brain Tumor Module, which have been validated in patients with cancer and primary CNS tumors respectively. Patients’ symptoms and effects on function are collected with the Activities of Daily Living scale, and the Instrumental Activities of Daily Living Scale. Mood and mental state were addressed using the Hospital Anxiety and Depression Scale. Separate questionnaires for different encounters and time points in outpatient treatment were included to assess care provider, as well as patient related measures, allowing for flexibility of the app to the needs of both. A mobile app was developed to collect, and archive in a database, input and feedback from both patients and care providers in oncology clinics. Conclusion: The creation of a patient centered quality of life and symptom assessment mobile app, following patients with primary brain tumors over their course of treatment and in follow-up is feasible. Pilot testing and patient evaluation of the application in an oncology clinic will be used to validate GlioNCI as a tool in outpatient clinics. Citation Format: Lindsay Rowe, Tuo Dong, Terri Armstrong, Megan Mackey, Mark Gilbert, Andra Krauze, Kevin Camphausen. A mobile app for health related quality of life and symptom assessment in patients with primary brain tumors in an outpatient oncology clinic. [abstract]. In: Proceedings of the 107th Annual Meeting of the American Association for Cancer Research; 2016 Apr 16-20; New Orleans, LA. Philadelphia (PA): AACR; Cancer Res 2016;76(14 Suppl):Abstract nr 1433.

A pilot study on an idiographic assessment of quality of life in patients enrolled in phase I clinical trials.

250 Background: Patient centered quality of life (QOL) is pivotal in treatment decision making for poor prognoses and recurrent solid tumors. Data regarding the best methods of QOL assessment for patients receiving chemotherapy for high risk cancers and enrolled in Phase I trials are sparse. We therefore piloted a QOL assessment that incorporated a validated metric as well as a novel “idiographic” questionnaire. Methods: Twenty-five women with high risk gynecologic malignancies (defined as &lt; 30% five year survival) and 10 patients enrolled in Phase I clinical trials were recruited after IRB approval was obtained. Patients’ answers to the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire 30 (QLQ-30) and “idiographic” QOL assessment were recorded and decoded. Raw scores of the QLQ-30 were standardized using linear transformation. Statistical analysis was performed using Mann-Whitney U and Chi-square testing with SPSS software. Results: Idiographic assessment resulted in 100 goal statements in 17 domains from patients in Phase I trials as compared to 260 goals in 20 domains from patients with high risk gynecologic malignancies. There were no differences in goal attainment or satisfaction with attainment between groups. There was a trend toward increased number of autonomy directed goals in the high risk group versus Phase I participants (23% vs. 11%, p=0.07) Median scores on functional (71 high risk vs. 84 Phase I) and global health status (58 high risk vs. 67 Phase I) scales were not different between the two groups. However, higher symptom burden was reported by the high risk group as compared to the median Phase I score (51 vs. 27, p&lt;0.01) Conclusions: There is a complex relationship between treatment decision-making and QOL for patients diagnosed with poor prognoses cancers. Further research is needed to better define QOL indicators and the impact of treatment on patient centered QOL.

Quality of life of patients with amyotrophic lateral sclerosis

The aim of this study is to evaluate the correlation between different measures of quality of life (QoL), functional status and mood status in patients with amyotrophic lateral sclerosis (ALS). A sample of 40 patients with ALS was recruited and scales for the evaluation of health-related QoL (SF36), patient-centered QoL (SEIQoL), functional status (ALSFRS) and depression (ZDS) have been administered to them. All the correlations (Pearson's r) between the scores have been considered and the t-test was performed in order to compare male with female patients. No correlation emerged between the different measures of QoL and functional status, apart from the scores of the Physical Functioning subscale of the SF36 which resulted positively correlated (p < 0.01) with those of the ALSFRS. Mood status resulted negatively correlated with many aspects of health-related QoL but not with patient-centred QoL. Data suggest that the relationship between functional status and different domains of QoL in this population of patients with a severely compromising disease is not linear and that the satisfaction with life of the patients themselves is not strongly related to the level of physical impairment.

Assessing Quality of Life for New Diabetes Treatments and Technologies: A Simple Patient-Centered Score

A simple quality of life measure is needed for use in diabetes, particularly for the assessment of new treatments and technologies. We devised and validated a patient-centered quality of life (PCQoL) measure that should be applicable to routine clinical practice or trial of therapies. People with diabetes completed a two-part, PCQoL questionnaire where they nominated five aspects of general- and diabetes-related life judged most important for their overall quality of life and rated each for current level of satisfaction. Scores derived from the questionnaire were compared with a reference measure-the Diabetes Control and Complications Trial diabetes quality of life (DQoL) score. Both were repeated after 1 month. The participants were 72 diabetic patients (60% with type 1 diabetes); 29 people with type 1 diabetes were treated by continuous subcutaneous insulin infusion (CSII) and 14 were treated by multiple daily insulin injections (MDI). Patients most often cited family and relationships or fear of complications and hypoglycemia as important facets of quality of life for them. The PCQoL measure was highly correlated with the reference DQoL measure (r = 0.73, p < 0.0001), had high repeatability (r = 91, p < 0.0001), and could be completed in less than 5 minutes. The test was sensitive enough to detect a better quality of life in CSII-treated patients vs MDI-treated patients. The PCQoL measure is simple, quick, valid, and suitable for routine use in diabetes or trials of new treatments.

Health Related Quality of Life in Patients with Chronic Kidney Disease

Monitoring a patient's functional status and the subjective state of well being as it related to health condition, together known as health related quality of life (HRQOL) measurements, is of particular importance in patients with chronic kidney disease (CKD) including those with end stage renal disease (ESRD). The concept of quality of life in dialysis has evolved since the inception of renal replacement therapy from simple survival to enjoying a certain level of well being. The measurement of dialysis outcomes have paralleled the improvement in the delivery of renal replacement therapy progressing from level of functioning, symptom checklists, multi dimensional well being, and moving perhaps to more patient centered quality of life. HRQOL domains have been strongly associated with objective patient outcomes. The self reported physical functioning and mental well being correlate with serum albumin and body composition measures. The ability of those on hemodialysis to self administer questionnaires is a barrier to the widespread use of multidimensional HRQOL assessment in clinical practice. However, new technologies using computer adaptive testing and item response theory may allow those questionnaires to be quickly and more efficiently administered by clinic staff. The finding of different HRQOL scores among CKD patients of different racial and ethnic backgrounds supports the need to individualize the concept of HRQOL, so that we can assess the crucial aspects of life in our patients and integrate these domains into a comprehensive plan of care. These recent findings underline the critical need to measure HRQOL and to expand the boundaries of our multidimensional tools with technology and a more patient centered concept of quality of life.