Browsing by Subject "Quality of life"

Children and adolescents with sickle cell disease (SCD) are at high risk for medical complications, neuropsychological sequelae, and lower overall quality of life. One target of intervention that can positively impact these outcomes is treatment adherence. Despite the known benefits of treatment adherence for health outcomes, children with SCD encounter several barriers that result in low overall levels of adherence and reduction of treatment benefits. Furthermore, little is known regarding the relationship between adherence and quality of life for this pediatric population. As such, two studies were conducted in order to (a) examine the relationship between treatment adherence and quality of life among youth with SCD, and (b) examine the feasibility, acceptability, and preliminary efficacy of a novel mobile health intervention to improve adherence among youth with SCD. For the first study, 46 children and adolescents with SCD and a caregiver were recruited. Results indicated that participants with good adherence had significantly higher parent-reported quality of life than participants with poor adherence. In contrast, based on child self-report, participants did not differ across quality of life domains. Subsequently, 43 participants were recruited to participate in the pilot intervention study, the Intensive Training Program (ITP). The intervention was conducted in two phases: Phase I recruited participants receiving iron chelation therapy to reduce the risk of iron overload associated with chronic red blood transfusions (n=11); Phase II broadened the scope of participants to those prescribed hydroxyurea (HU; n=32), a once daily oral medication. Results indicated that patients and their caregivers endorsed high levels of acceptance, ease of use, and satisfaction with mobile health technology. In addition, participants encountered several technological issues that limited access and resulted in poor compliance with the ITP for some participants early on in the study. Despite this, participants demonstrated significant increases in medication possession ratio (MPR) based on pharmacy refill as well as sustained improvements in disease knowledge. Adherent participants demonstrated significant decreases in outcomes related to caregiver burden as well as significantly lower pain impact when compared to non-adherent youth. In addition, children who were adherent reported quality of life and overall SCD-related functioning at a clinically-significant higher level when compared to those who were non-adherent. Implications for future research and application to clinical care are discussed.

Burn injuries are devastating in both the acute and chronic phases. Survivors face life-lasting effects from such injuries, often decreasing general health, quality of life and employment status. With increased survival rates post-burn injury, increased research is needed to evaluate the recovery status of patients post discharge, and to identify residual patient needs.

This study measured depression, functional dependence in activities of daily living, quality of life (QoL) and return to work (RTW) 3- and 6-months, and identified factors associated with poor outcomes. Inpatients at Wuhan Third Hospital were asked to join the study as they were being discharged. 280 participants completed the baseline survey, where depression severity and functional dependence were measured using Patient Health Questionnaire-9 and the Barthel Index, respectively. QoL was measured using the Burn Specific Health Survey Brief (BSHS-B) 3- and 6-month, and RTW was collected at the same time-points. Factors associated with each outcome were identified through hypothesis tests and logistic regression models.

Nearly 15% of participants met the depression cut-off score, but over 70% required at least some assistance in daily living according to the BI results. Longer length of stay (LOS) resulted in greater odds of having a depressive PHQ-9 score. LOS, along with older age, female gender and full-thickness burns was significantly associated with functional dependence. 64.7% and 70.3% of participants reported a good QoL at 3- and 6- month follow-ups, respectively. Larger total body surface affected by burn and longer

LOS greatly decreases participant odds of having a good QoL at both time points. Three iv

months after hospital discharge, 66.4% of participants returned to work, and increased to 67.2% 6 months after discharge. Significant differences in RTW rate existed by age, education level, burn depth, LOS and BI score. Participants with LOS longer than two weeks had nearly 7 times lower odds of returning to work than those with stays one week or shorter, even after adjusting for burn depth and size.

There does not appear to be a large residual need for mental health services for burn injury patients at Wuhan Third Hospital, and high percentage of participants with favorable high QoL is reassuring that current burn care largely addresses patient needs. The percentage of patients reporting need for assistance in daily activities and lack of RTW demand the most attention in future rehabilitation interventions. The study reveals that participants with LOS longer than two weeks have much higher odds of having poor outcomes compared to patients with shorter stays. Further research should be carried out to establish the direction of the relationship between LOS and recovery outcomes to form plans to mitigate modifiable determinants. This would affect multiple adverse burn injury outcomes.

Background: Patients with gastrointestinal (GI) cancers experience 10 to 15 co-occurring symptoms during chemotherapy that decrease their functional status, quality of life (QOL), and overall survival. The purposes of this dissertation were to describe symptom experiences and self-management strategies for multiple co-occurring symptoms in patients with gastric cancer; identify the subgroups of patients with GI cancers based on their distinct symptom experience profiles; and determine differences among these subgroups in demographic and clinical characteristics, as well as co-occurring symptoms and QOL outcomes.

Methods: An integrative review, a qualitative study, and three quantitative studies (i.e., one was cross-sectional, two were longitudinal) were used in this dissertation. Twenty-five studies were included and systematically evaluated in the review. Ten participants were interviewed for their symptom experiences and self-management strategies. Patients (n=405) completed questionnaires (e.g., the Memorial Symptom Assessment Scale, the Lee fatigue Scale, the General Sleep Disturbance Scale) six times over two cycles of chemotherapy. Content analysis was used to analyze the qualitative data. Latent class/profile analysis was used to identify the subgroups of patients with distinct symptom profiles. Differences in demographic and clinical characteristics as well as co-occurring symptoms and QOL outcomes among the subgroups were evaluated using parametric and non-parametric analyses.

Results: The most common symptoms were categorized into physical and affective/cognitive domains. Patients reported a large amount of inter-individual variability and dynamic nature in their experiences of multiple co-occurring symptoms. Four symptom self-management strategies were identified: medications for symptoms, information-seeking from the clinician team, lifestyle modifications, and psychosocial and spiritual support. The risk factors for a higher symptom burden included younger age, not being married/partnered, being unemployed, having childcare responsibilities, lack of regular exercise, having a lower functional status, having a higher comorbidity burden, and self-reported diagnosis of depression. Patients with a more severe symptom profile reported higher levels of morning and evening fatigue, sleep disturbance, anxiety, depressive symptoms, and pain, as well as lower levels of attentional function and QOL scores at enrollment.

Conclusions and Implications: This dissertation is the first to identify the subgroups of patients with GI cancers with distinct symptom experience profiles and examine a number of risk factors associated with more severe symptom profiles, as well as describe symptom experiences and self-management strategies for multiple co-occurring symptoms in patients with gastric cancer. Additional research is warranted to explore underlying mechanisms that contribute to the development of multiple co-occurring symptoms during chemotherapy. Clinicians need to assess for common risk factors and associated co-occurring symptoms, as well as initiate personalized symptom management interventions and referrals.

Children with sickle cell disease (SCD) have a high risk of neurocognitive impairment. No known research, however, has examined the impact of neurocognitive functioning on quality of life in this pediatric population. In addition, limited research has examined neurocognitive interventions for these children. In light of these gaps, two studies were undertaken to (a) examine the relationship between cognitive functioning and quality of life in a sample of children with SCD and (b) investigate the feasibility and preliminary efficacy of a computerized working memory training program in this population. Forty-five youth (ages 8-16) with SCD and a caregiver were recruited for the first study. Participants completed measures of cognitive ability, quality of life, and psychosocial functioning. Results indicated that cognitive ability significantly predicted child- and parent-reported quality of life among youth with SCD. In turn, a randomized-controlled trial of a computerized working memory program was undertaken. Eighteen youth with SCD and a caregiver enrolled in this study, and were randomized to a waitlist control or the working memory training condition. Data pertaining to cognitive functioning, psychosocial functioning, and disease characteristics were obtained from participants. The results of this study indicated a high degree of acceptance for this intervention but poor feasibility in practice. Factors related to feasibility were identified. Implications and future directions are discussed.

Background: A growing number of female passengers of a newly-introduced battery powered taxi, referred to as the `Easy Bike´, sustained Spinal Cord Injuries and anterior neck lacerations. This severe injury occurs, as their traditional scarves entangle in the taxi´s engine drive shaft. Injuries sustained by entanglements of scarves in machinery has been known in the literature as Scarf Injuries. This study aimed to conduct key informant interviews to explore Scarf injury survivors challenges in receiving adequate care and maintaining a high Quality of Life (QoL). Methods: We conducted semi-structured in-depth interviews with 12 Scarf Injury survivors and their caregivers after discharge from a rehabilitation center in Bangladesh. Results: The main themes that emerged from the qualitative data were 1) perceived level of health, function and possible participation, 2) access to emergency and acute care and quality of care, 3) challenges in community reintegration. Participants often perceived their ability to perform activities and tasks to be lower than their bodily functions allowed, leading to a self-limitation in their daily social life. Commonly reported health concerns were urinary and bladder control, infections and breathlessness. None of the participants perceived that they received appropriate emergency care at the injury site, and transportation to a medical facility usually occurred in unsafe vehicles due to limitations in general awareness and knowledge of the injury sustained. At the facilities there was a reported gap in knowledge and competencies regarding the etiology of this type of SCI, leading to multiple referrals for diagnosis and delayed management. Community and social reintegration was mainly impacted by lack of financial resources, lack of realistic goals, poor mental health including suicidal thoughts and previously mentioned secondary complications.

Conclusions: Increasing awareness and knowledge about SCI emergency and acute care might contribute to improved long-term clinical outcomes and survival rates among Scarf Injury survivors. Moreover, greater competencies and awareness among providers to manage this unique mechanism of injury would increase the patient´s and caregiver´s level of understanding of their condition, and would result in earlier adoption of a coping process.

Implications: Early rehabilitation that focuses on physical and mental health, alongside empowerment and integration, appears to be lacking in this setting Further studies are needed to identify effective and culturally sensitive intervention programs for females living with Scarf Injuries in LMICs.

AbstractProblem and purpose Multiple myeloma (MM), a cancer of the plasma cells, is the second most common hematologic malignancy in the United States with an estimated 34,920 new cases and 12,410 deaths in 2021. Though still considered incurable, treatment advances in the last 20 years have dramatically extended survival for many with MM. Overall median survival has increased from approximately two years in 2000 to more than five years in 2020. Though survival has improved, research suggests that those with MM experience high symptom burden and poor health related quality of life (HRQoL), though these outcomes are not well described in the literature. The purpose of this dissertation is to explore symptom burden and HRQoL outcomes in adults with MM. Methods The aims of this dissertation were achieved through: (1) a systematic review of symptoms and HRQoL in adults with relapsed/refractory multiple myeloma (RRMM); (2) a qualitative descriptive study of patients’ experiences living with MM; and (3) a cross-sectional observational survey study exploring symptoms and HRQOL among adults with MM recruited through the Duke Cancer Institute (DCI) Tumor Registry. Our systematic review of the literature aimed to summarize what is known about symptoms and HRQoL in adults with RRMM and assess patient-reported outcome (PRO) reporting quality. Next, our qualitative study explored the physical, emotional, and social impacts of MM and its treatment through semi-structured interviews of MM patients and clinicians. Results from the systematic review and qualitative study informed the design of a cross-sectional observational study of symptom burden and HRQoL in adults with MM. Those with MM diagnosed between the years 2000 to 2019 were identified through the DCI and mailed surveys assessing symptom burden and HRQoL. Results Our systematic review included 30 manuscripts, 25 of which were clinical trial reports. Pain, fatigue, and emotional function were the most commonly reported PROs. Prevalence and severity of symptoms and HRQoL outcomes were rarely reported, limiting our ability to summarize symptom burden and HRQoL. Further, our evaluation of PRO reporting quality revealed significant reporting deficiencies. Findings from our qualitative study highlighted the serious, unrelenting, and far-reaching impacts of MM and the ongoing nature of its treatment. Four themes emerged from our analysis of interviews with 15 MM patients and 10 MM clinicians: 1) treatment without end; 2) social impacts and isolation; 3) ongoing financial pressure; and 4) relationship impacts. In our cross-sectional study among adults with MM, 690 completed surveys were returned for a response rate of 64.7%. The most commonly reported moderate to severe symptoms were pain (47.6%), fatigue (44.3%), insomnia (32%), decreased libido (31%), and peripheral neuropathy (30.0%). More than half (55.7%) of MM patients reported three or more moderate to severe symptoms. Younger age, more comorbidities, and not being in remission were independently associated with increased symptom burden. MM patients experienced significantly worse physical health, mental health and physical function when compared to the general population (p<.0001), though social function did not differ significantly (p = 0.09). Lower socioeconomic status, lesser quality of social support, more comorbidities, past radiation therapy, and not being in remission were significantly associated with worse HRQoL outcomes among patients with MM. Conclusion Our systematic review revealed that the existing MM literature provides limited evidence of the prevalence or severity of symptoms and HRQoL challenges of patients with MM and is further hindered by suboptimal reporting quality. Our qualitative study revealed that the far-reaching negative impacts of MM on HRQOL are experienced in the context of unrelenting treatment. Our survey-based study revealed an alarmingly high symptom burden and poor HRQoL among MM patients. Given this, MM patients would greatly benefit from a concerted and multidisciplinary effort to identify and address their many needs. Future research is needed to better describe complex MM treatment patterns and investigate strategies to better meet the needs of patients with MM.

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