Reported Poorer Quality Of Life Research Articles

Chronic Rhinosinusitis With Nasal Polyps: Quality of Life in the Biologics Era

Chronic rhinosinusitis (CRS) affects up to 12% of the general population and is traditionally divided into two main phenotypic subsets, based on the presence of nasal polyps (CRSwNP) or their absence. It is well-established that many patients with CRSwNP report poor quality of life (QoL), which is further compromised by comorbidities (eg, asthma, bronchiectasis, aspirin-exacerbated respiratory disease). Chronic rhinosinusitis CRS with nasal polyps is managed with a combination of medical therapy and surgical interventions, and biologics are emerging as a promising new treatment option for patients with inadequate response to the standard of care. A range of patient-reported outcome measures have been used to assess QoL for patients with CRSwNP in clinical trials, including disease-specific questionnaires (eg, Sino-Nasal Outcome Test-22) and generic ones (eg, Short Form-36). Significantly impaired QoL has been identified as a criterion for the indication to use biologics in patients with CRSwNP. This review summarizes clinical evidence (2010-2021) on QoL outcomes with currently available treatments for CRSwNP and assesses the improvement in QoL after biologic treatments, especially for patients with comorbidities reported in interventional studies (randomized controlled trials and real-world experience).

Living with narcolepsy during adolescence: A qualitative study

RATIONALE: Narcolepsy is a chronic sleep disorder, with typical onset in childhood or adolescence. Features of narcolepsy include excessive daytime sleepiness (EDS), cataplexy, sleep paralysis, hallucinations and disturbed nocturnal sleep. The constellation of symptoms may be challenging for patients to manage. Adolescents with narcolepsy report poor quality of life and mental health concerns. OBJECTIVE: The objective of this report was to understand the experience of living with narcolepsy as an adolescent and its impact on daily functioning, relationships and mental health. METHODS: In-depth, semistructured interviews with adolescents with narcolepsy were conducted from May to August 2019 at the Hospital for Sick Children in Toronto, Canada. Interview questions focused on perceptions of 1) disease symptoms, 2) mental health, 3) daily functioning, 4) relationships and 5) coping. Interviews were digitally audio-recorded for verbatim transcription, coded by two researchers and analyzed using NVivo qualitative data computer software. RESULTS: Eighteen adolescents with narcolepsy (age range = 10-17, mean age = 14.4 ± 2.0, 72.2% male) participated. The findings suggest some of the common symptoms of narcolepsy (eg, EDS) are often experienced as unpleasant, while vivid dreaming may be pleasant. Emotional challenges such as frustration with symptoms and worries about the future are common. Participants emphasize the importance of ongoing support from others (eg, clinical team, teachers) to help with coping with chronic illness. CONCLUSION: Living with narcolepsy poses unique challenges for adolescents and impacts their psychosocial health. We recommend increased psychosocial support from mental health professionals, educational resources for schools and teachers, and peer support groups for adolescent narcolepsy patients.

PTH 1-34 Replacement Therapy Has Minimal Effect on Quality of Life in Patients With Hypoparathyroidism.

In addition to hypocalcemia, patients with hypoparathyroidism report poor quality of life (QOL), complaining of fatigue and "brain fog." Parathyroid hormone (PTH) therapy can effectively manage hypocalcemia; however, the effects of PTH treatment on QOL are unclear. Thirty-one patients with hypoparathyroidism were treated in an open-label study with full replacement subcutaneous PTH 1-34 twice daily for up to 5.3 years, with individualized fine-dosing titration. Prior to initiation of PTH 1-34, conventional therapy was optimized. The 36-Item Short Form (SF-36) Health Survey, Fatigue Symptom Inventory (FSI), and 6-minute walk test (6MWT) were assessed at PTH start (baseline), every 6 months on PTH, and after PTH discontinuation. The SF-36 assesses physical function (PF), physical role limitations (RP), bodily pain (BP), general health (GH), vitality (VT), emotional role limitations (RE), social function (SF), and mental health (MH). Compared to population norms, patients at baseline had lower scores in RP, GH, VT, and MH (p< 0.05), consistent with impaired QOL. With PTH therapy, only GH at 6 months and VT at 12 months improved (p< 0.05). At the last treatment time point, RP, VT, and SF improved compared to baseline (p< 0.05). However, follow-up scores were unchanged from baseline or last PTH treatment, except for SF, which had decreased at follow-up compared to on-PTH (p< 0.05). On the FSI, there were no changes in fatigue frequency; perceived interference was improved at 12 and 18 months and composite severity was improved only at 60 months (p< 0.05). The 6MWT measures did not change. In conclusion, hypoparathyroidism is associated with decreased QOL. Despite the bias in open-label studies to predict improvements in QOL, PTH therapy had limited and non-sustained effects on QOL, inconclusive changes in fatigue experience, and no change in the 6MWT. Although PTH 1-34 can adequately manage the hypocalcemia in hypoparathyroidism, its effects on QOL appear to be minimal. © 2021 American Society for Bone and Mineral Research (ASBMR). This article has been contributed to by US Government employees and their work is in the public domain in the USA.

Liver cirrhosis turns life into an unpredictable roller coaster: A qualitative interview study.

AimTo explore how persons living with liver cirrhosis experience day‐to‐day life.BackgroundLiver cirrhosis is the sixth most common cause of death among adults in Western countries. Persons with advanced liver cirrhosis report poor quality of life, in comparison with other chronic diseases. However, knowledge regarding day‐to‐day life during earlier stages of the disease is lacking. In other chronic diseases, the suffering process is well explored, while in liver cirrhosis, suffering is insufficiently investigated.DesignAn exploratory study, with a qualitative inductive interview approach.MethodsA purposive maximum variation sample of 20 informants with liver cirrhosis aged 25–71, from two gastroenterology outpatient clinics in mid‐Sweden, were interviewed from September 2016 to October 2017. Interview data were analysed inductively with qualitative content analysis. Reporting followed the COREQ guidelines.ResultsThe experiences of day‐to‐day life living with liver cirrhosis comprised four sub‐themes. Living with liver cirrhosis implied varying levels of deterioration, the most apparent being exhaustion or tiredness. The informants had to find ways of adapting to a new life situation. The insecurity of future health evoked existential reflections such as feeling emotionally and existentially distressed. Shame and guilt were reasons for feeling stigmatised. These sub‐themes emerged into one overarching theme of meaning: life turns into an unpredictable roller coaster. This is based on experiences of liver cirrhosis as an unpredictable disease with fluctuating symptoms, worries and disease progression.ConclusionLiving with cirrhosis implies an unpredictable condition with a progressive, stigmatising disease. The fluctuating symptoms and deep concerns about future life pose an increased personal suffering.Relevance to clinical practiceWithin health care, knowledge of the person's experience is vital to enable and fulfil the person's healthcare needs. Clinical registered nurses need a person‐centred approach to strengthen their patients to cope with their new life situation.

A 12-Week Pilot Exercise Program for Inactive Adults With Celiac Disease: Study Protocol.

BackgroundIndividuals with celiac disease must follow a strict gluten-free diet (GFD) in order to avoid negative short- and long-term health consequences. Unfortunately, many people with celiac disease report poor quality of life (QoL) despite following a strict GFD, and up to 30% still report negative symptoms (eg, gastrointestinal upset).PurposeThe purpose of the MOVE-C (understanding the relationship between the MicrobiOme, Vitality, and Exercise in Celiac disease) pilot study is to explore the effects of a 12-week supervised progressive high-intensity interval training (HIIT) and lifestyle intervention on physiological, behavioral, and psychosocial outcomes among inactive adults with celiac disease.Methods/Design: Sixty inactive adults diagnosed with celiac disease will be randomized to HIIT+ or waitlist control (WLC). Participants in the HIIT+ will engage in a 12-week HIIT + lifestyle education program. HIIT sessions will be comprised of 2 workouts per week, working up to 14 × 30-second intervals at 90% maximal heart rate (HRmax) followed by 2 minutes recovery at 50% HRmax. The 6 biweekly lifestyle sessions will involve education on the promotion of a whole foods GFD, sleep hygiene, psychosocial coping skills (eg, self-compassion), and self-regulatory skills to master changes in behaviors. Assessments will occur at pre and post 12-week intervention and 3-month follow-up. WLC participants will be offered a 12-week HIIT program + online lifestyle education sessions after completing the final assessment. The primary outcomes are QoL and gut microbiota composition assessed with 16S rRNA sequencing. The secondary outcomes are markers of metabolic syndrome (waist circumference, fasting glucose, serum lipids, blood pressure, and body composition), gastrointestinal symptoms, sleep quality, adherence to a GFD, exercise behavior, self-regulatory efficacy, and self-compassion. It is hypothesized that participants in the HIIT+ will experience improvements in all outcomes when compared to those in the WLC. These improvements are expected to be maintained at the 3-month follow-up.DiscussionThe findings from this study will advance the knowledge regarding the effects of HIIT and lifestyle education on key outcomes for an at-risk chronic disease population. Furthermore, the findings can be used to inform future programs to improve fitness and physical and mental health outcomes for people with celiac disease.

Subtotal Thyroidectomy with Local Cervical Block Anesthesia in Rural Uganda

Introduction: Thyroid disease remains endemic in many developing nations and is largely the consequence of iodine deficiency. Patients with large goiters may have associated compressive symptoms, hyperthyroidism, or report poor quality of life. Surgery is the principal treatment of large symptomatic goiters but remains particularly challenging in resource-limited settings. Constraints to the surgical management of thyroid disease in Uganda include more advanced disease because of delayed presentation, limited supplies and equipment, limited formal training in endocrine surgery, and limited access to anesthesia.1–4 With a population of >40 million people, Uganda has <100 qualified anesthesia providers, with only a minority of those being physicians.2,3 Owing to this shortage of anesthesia providers in Uganda, some surgeons opt to perform thyroidectomies under local anesthesia. This video demonstrates a subtotal thyroidectomy performed under local cervical block anesthesia for the treatment of a large symptomatic goiter. Materials and Methods: The aim of this video is to provide a demonstration of a subtotal thyroidectomy performed by using only local anesthesia. A 52-year-old female presented with a large symptomatic multinodular goiter. The operation was performed as part of a surgical outreach camp at Nebbi hospital in northwestern rural Uganda.5 Owing to inaccessibility of thyroid replacement hormone and low suspicion for malignant disease, a subtotal thyroidectomy was performed. The patient was alert and conscious throughout the procedure. A 0.25% lidocaine solution with diluted adrenaline was used as local anesthetic.6 The lateral aspect of the sternocleidomastoid muscle is injected bilaterally as it is the standard Kocher incision site. Owing to constraints of the operative facility, the procedure was performed without the use of electrocautery or suction irrigation. Hemostasis was achieved with hand-tied 3-0 or 2-0 silk sutures. The recurrent laryngeal nerve and parathyroid glands were identified intraoperatively. The patient's pain level and phonation can be tested throughout the procedure. The specimen was extracted en bloc and pathology analysis grossly demonstrated multinodular goiter. No drain was placed. Results: An effective subtotal thyroidectomy was performed without intraoperative complication. The patient tolerated the procedure well. The recurrent laryngeal nerve and parathyroid glands were preserved. The operative time was <2 hours and blood loss was minimal. There was no stridor, hoarseness, or symptoms of hypocalcemia identified postoperatively. Gross pathology analysis confirmed suspicion of multinodular goiter. Conclusion: Subtotal thyroidectomy for large symptomatic goiters may be performed safely in a resource-limited setting with the use of local anesthetic only. It is an excellent option for patients when access to anesthesia care is limited or unavailable. No competing financial interests exist. Runtime of video: 4 mins 38 secs

Rehabilitation in patients with pulmonary arterial hypertension.

Exertional dyspnoea is a leading symptom in patients with pulmonary arterial hypertension (PAH). Patients suffering from PAH report poor quality of life, have skeletal muscle dysfunction and in the absence of advanced medical therapy deteriorate progressively due to right heart failure which can lead to death. For decades, patients with PAH were advised to avoid exercise in fear of exacerbated right heart failure. Recently, it has been shown that a highly supervised rehabilitation programme in expert centres leads to significant improvements in symptoms, quality of life, exercise capacity and may even enhance haemodynamics in selected stable patients treated with advanced regimens of PAH-targeted drugs. As a consequence of these promising results, pulmonary rehabilitation performed in an expert centre has been included in recent guidelines. The underlying mechanisms are not completely understood, but positive effects can be measured in different organ systems such as skeletal muscles, the cardiopulmonary system and immune system (inflammation), and also on the psychological level. Thus, improvements in 6-minute walking distance (6MWD), peak oxygen uptake (VO2 peak), muscle strength and muscle endurance, as well as physical and mental quality of life scores (SF-36 questionnaire) have been shown. Different training protocols have been used. Essential are qualified patient selection in expert centres, a low workload endurance and dumbbell (weight lifting) training avoiding strenuous exercise and exhaustion, thorough patient education and close supervision by experts especially during the first weeks. Adverse events may occur (e.g., pre-/syncope, arrhythmia, respiratory infections). PAH patients tend to overestimate their physical capacity, not perceiving their own limits properly, which makes education and expert advice even more important as exercise training can also worsen the right heart failure. Therefore, a core issue of the multidisciplinary rehabilitation is the close cooperation between the experienced rehabilitation clinic offering a specialised programme for PAH patients and the PAH expert centre, which takes care of the patient and is thoroughly involved in the training programme. Further multicentre international randomised trials are needed to evaluate whether this specialised programme is feasible within different healthcare systems and to assess long term effects and survival.

Shared decision-making in ovarian cancer.

5549 Background: The value of shared decision-making in ovarian cancer is relatively unexplored. The goal of this study was to test a new decision aid, Patient Centered Outcome Aid (PCOA), that facilitates shared decision-making and helps ovarian cancer patients assimilate information and identify quality of life (QOL), toxicity and survival trade-offs between IP/IV therapy and IV therapy alone, based on their preferences and personal clinical characteristics. Methods: Participants were randomized to either PCOA (N=64) or usual care (N=59). Patient characteristics, QOL and shared decision-making data were collected at baseline and treatment initiation. Primary outcomes included satisfaction with treatment decision and decisional regret. Comparisons were made using t-tests and multivariate methods, adjusting for patient covariates. Multivariate linear models were used to investigate predictors of the primary outcomes. Results: Although satisfaction and decisional regret did not differ significantly by arm at any time point, the majority of PCOA patients indicated that the aid helped them understand treatment options and side effects. Notably, low shared decision-making and low QOL, were significant predictors of low satisfaction at treatment initiation (multiple r=0.76), six months (multiple r=0.48) and nine months (r=0.58). They were also significant predictors of decisional regret (multiple r=0.48 and 0.36 at 6 and 9 months). Patient covariates including age, stage, treatment and neoadjuvant status were not associated with differences in satisfaction or decisional regret. Conclusions: There were no clinically meaningful differences in satisfaction with the treatment decision, or decisional regret between the study arms. The absence of a difference may reflect the high degree of shared decision-making in both arms and greater disease severity in PCOA patients, who were more likely to report low baseline QOL and declining QOL over time. Both shared decision-making and quality of life were robust, independent predictors of satisfaction with the treatment decision over time. This implies that women who perceive themselves as less engaged in the decision process, and report poor QOL may benefit from a decision aid, in addition to physician counseling. Clinical trial information: NCT02259699.

Quality of life, psychological wellbeing and treatment needs of trauma and head and neck cancer patients

There is increasing evidence that patients treated for trauma or cancer of the head and neck may go on to experience psychological distress. We aimed to measure the impact of this on their quality of life (QoL) and to explore their willingness to be referred for psychological support. A total of 96 patients with facial injuries and 124 with cancer of the head and neck completed a self-reported questionnaire to identify psychological distress (Hospital Anxiety and Depression Scale (HADS) and the Acute Stress Disorder (ASD) Scale), quality of life (WHOQoL-BREF), satisfaction with treatment, and willingness to accept psychological support. Thirty-nine percent of patients showed high levels of depressive symptoms and 43% reported high levels of anxiety; 43% in the trauma group and 12% in the cancer group had high ASD scores. Patients with high scores on the HADS reported poorer QoL, and 40% of those with high levels of psychological distress were willing to consider psychological support. Despite the fact that patients report high levels of satisfaction with their medical and surgical care, many have psychological problems and have needs that are not being met. A large proportion would use psychological support services.

Trans-meatal endoscopic exposure of middle ear structures: potentials and limitations

Chronic rhinosinusitis (CRS) affects up to 12% of the general population and is traditionally divided into two main phenotypic subsets, based on the presence of nasal polyps (CRSwNP) or their absence. It is well-established that many patients with CRSwNP report poor quality of life (QoL), which is further compromised by comorbidities (eg, asthma, bronchiectasis, aspirin-exacerbated respiratory disease). Chronic rhinosinusitis CRS with nasal polyps is managed with a combination of medical therapy and surgical interventions, and biologics are emerging as a promising new treatment option for patients with inadequate response to the standard of care. A range of patient-reported outcome measures have been used to assess QoL for patients with CRSwNP in clinical trials, including disease-specific questionnaires (eg, Sino-Nasal Outcome Test-22) and generic ones (eg, Short Form-36). Significantly impaired QoL has been identified as a criterion for the indication to use biologics in patients with CRSwNP. This review summarizes clinical evidence (2010-2021) on QoL outcomes with currently available treatments for CRSwNP and assesses the improvement in QoL after biologic treatments, especially for patients with comorbidities reported in interventional studies (randomized controlled trials and real-world experience).

Old and Poor

The number of elderly residing in Florida has made it one of the bellwether states reflecting the future circumstances and needs of the older population (Naisbitt, 1982). This survey examines low income older men and women whose economic and social circumstances brought them to community based meal programs. A total sample of 1,083 was surveyed at day-time meal programs for the elderly poor residing in three south Florida communities. The findings of this study demonstrate that the poor elderly self report poor quality of life, high levels of isolation, unhappiness, and despair.