Life In Adult Patients Research Articles

An Overview of Reviews on Predictors of Neurorehabilitation in Surgical or Non-Surgical Patients with Brain Tumours

(1) Background. People suffering from brain cancer, regardless of histological tumour characteristics, often experience motor disturbances, cognitive–behavioural difficulty, language impairments, and functional and social limitations. The current treatment approach entails surgery and adjuvant therapy such as chemotherapy and radiotherapy combined with intensive rehabilitation. The primary focus of rehabilitation is usually motor and functional recovery, without specifically addressing the patient’s quality of life. The present systematic review identifies and evaluates the predictors of functional and cognitive rehabilitation outcomes and their influence on quality of life in adult patients with brain cancer. (2) Methods. Three electronic databases (PubMed, Elsevier, Cochrane) were searched for reviews about functional, cognitive, and quality-of-life outcomes in patients with central nervous system tumours, including articles published between January 2018 and May 2024. (3) Results. The search retrieved 399 records, 40 of which were reviewed. Five main areas of predictive factors were identified: diagnosis, therapy, complications, outcomes (in the motor, cognitive, and quality-of-life categories), and tailored rehabilitation. (4) Conclusions. These indicators may inform integrated care pathways for patients with primary central nervous system tumours.

Adherence and Quality of Life in Adult Patients With Haemophilia A, Haemophilia B and Von Willebrand Disease: A National Cross-Sectional Survey.

New treatments for patients with bleeding disorders (PWB) have emerged, including products with extended half-life and subcutaneous administration. These less frequent treatments can potentially enhance quality of life (QoL), but adherence becomes critically important. To investigate adherence and QoL among PWB and explore the correlation between treatment adherence and QoL in adult patients with haemophilia A (HA), haemophilia B (HB) and Von Willebrand disease (vWD) in Denmark. This survey used disease-specific patient-reported questionnaires: Veritas-PRO and Veritas-PRN to measure adherence, and Haemo-A-QoL and VWD-QoL to assess QoL. Responses were obtained from 149 patients with HA, 32 with HB and 118 with vWD. Adherence was reported by 87.1% of patients on prophylaxis and 71.2% of patients treated on demand, according to Veritas-PRO and Veritas-PRN cut-off scores. High QoL was generally reported, decreasing with age in HA and HB, but not in vWD. Danish patients with HA, HB and vWD reported high QoL and high adherence to prescribed treatments. There was no correlation between treatment adherence and QoL among the different patient groups. These findings highlight the need for further research to better understand adherence behaviours and identify opportunities to further improve QoL in PWB.

Early region-specific impact of adjuvant radiation therapy on cognition and quality of life in adult patients with primary brain tumors.

While treatments for primary brain tumors increase survival, they have cognitive sequelae. Neurocognition's anatomical distribution makes it susceptible to brain damage. This study aims to evaluate the contribution of radiotherapy on short-term cognitive impairment. Using a prospective database of cognitive rehabilitation in adults operated on for primary brain tumors, a retrospective sub-analysis of the contribution of radiotherapy was performed. Thirty-four subdivisions of 12 neurocognitive regions were delineated in 48 irradiated patients and 30 non-irradiated patients. In the first group, the correlation between radiation dose and deterioration was evaluated. In all patients, the impact of tumor and surgical changes on dysfunction was calculated and compared with dose-dependent response. The correlation between cognitive status and radiation dose is especially strong and significant in the left hemisphere and in specific subdivisions such as the posterior hippocampus or the dorsolateral prefrontal cortex, with the left prevailing over posterior dominance. Memory is the most affected domain 1month after radiotherapy, as attention is three months later. The hippocampus is involved in various cognitive domains in addition to memory. The prefrontal subregions and the genu of the corpus callosum are more affected by the relationship with disease and surgical changes than by radiation exposure. Patients ongoing a course of radiotherapy do not benefit from concurrent cognitive rehabilitation. There is a correlation between the dose of radiation received by several encephalic regions and degree of short-term domain-specific cognition decline, considering other factors of risk and cognitive rehabilitation.

Monitoring the Quality of Life and the Relationship between Quality of Life, Dietary Intervention, and Dietary Adherence in Patients with Coeliac Disease.

Inadequate adherence to a gluten-free diet in coeliac disease triggers autoimmune reactions and can reduce the quality of life. The strict diet requires constant vigilance, which can cause psychological distress. Our research aimed to assess the quality of life in adult patients with coeliac disease and to find a correlation between quality of life, dietary intervention, and adherence. The study included 51 adult patients with coeliac disease who completed a quality-of-life questionnaire. Adherence was assessed using serological tests and a dietary adherence test. The patients were divided into two groups: those on a gluten-free diet for at least three months (Group I) and newly diagnosed patients (Group II). Group I showed a significant decrease in the dysphoria subscale of the quality-of-life test between the first and last surveys. Poor quality of life was associated with worse adherence in Group II. A higher "Health concerns" quality of life subscale score was also associated with worse adherence in Group II. Our results suggest that dietetic care may be beneficial for patients with coeliac disease by reducing dysphoria. We recommend regular and long-term dietary monitoring from diagnosis to ensure adherence to a gluten-free diet and to maintain quality of life.

The Role of Perceived Stigma and Social Support in Predicting the Quality of Life in Adult Patients living with HIV/AIDS attending ART centre in a tertiary care hospital in North India

Background: HIV/AIDS remains an international public health concern causing enormous morbidity and mortality. Although antiretroviral therapy (ART) has improved the outlook for patients living with HIV/AIDS (PLWHA), many still face psychosocial challenges that negatively impact their quality of life (QOL). HIV related perceived stigma and social support have a bearing on their QOL. Aims and Objectives: To assess the QOL of PLWHA attending an ART centre in Jammu, India and to assess the role of perceived stigma and social support in predicting QOL in this population. Material and Methods: This cross-sectional study was conducted at the ART centre of Government Medical College, Jammu for 8 months. A sample of 300 PLWHA was selected using a convenience sampling strategy. Data was collected using questionnaires assessing socio-demographic profile, QOL (POZQOL), perceived stigma (12-item short version of the HIV stigma scale), and perceived social support (MSPSS). Results: Mean scores for various domains of QOL i.e. Psychological, Social, Health concerns and Functional were 10.79±3.76, 10.18±3.70, 8.81±3.16 and 10.76±3.35 respectively. Perceived Stigma and social support were found to be significantly correlated with all QOL domains. Conclusion: QOL of PLWHA was enormously influenced by various socio-demographic factors, stigma, and perceived social support. Targeted interventions to reduce stigma, strengthen social support systems can improve QOL for PLWHA.

Quality of life in adult patients with hematological malignancy- treading a road less travelled

Quality of life in adult patients with hematological malignancy- treading a road less travelled

PCR211 Health-Related Quality of Life in Adult Patients With Glaucoma, With or Without Visual Impairment in the US: Analysis of National Data From 2017 to 2021

PCR211 Health-Related Quality of Life in Adult Patients With Glaucoma, With or Without Visual Impairment in the US: Analysis of National Data From 2017 to 2021

Long-term effects of the titanium butterfly implant on quality of life: a prospective cohort study

PurposeNasal valve insufficiency is known to have a negative impact on both nasal patency and quality of life. The titanium butterfly implant is a surgical treatment proven to have a positive effect on these aspects up to 6 months postoperative. This study aimed to determine the long-term effects of the titanium butterfly implant on nasal obstruction symptoms and quality of life in adult patients with nasal valve insufficiency up to 5 years after procedure.MethodsA prospective single cohort study was performed including 29 patients that underwent the titanium butterfly implant in one tertiary medical center. Data was obtained before and at least 5 years after surgery using three questionnaires: the Nasal Obstruction and Septoplasty Effectiveness questionnaire, the Sino-Nasal Outcome Test 22 and the Glasgow Benefit Inventory questionnaire.ResultsA significant decrease in total NOSE score was seen compared to baseline measurements. The SNOT-22 scores also showed a significant decrease, whereas the GBI scores showed no significant changes at the late follow-up.ConclusionSeven years after placement the titanium butterfly implant still has a statistically significant improvement on otorhinologic-related quality of life compared to preoperative measurements.

Translation and validation of the German version of the FACE-Q paralysis module in adult patients with unilateral peripheral facial palsy

The aim was to develop and validate a German version of the FACE-Q paralysis module, a patient-reported outcome measure to assess health-related quality of life in adult patients with unilateral facial palsy. The FACE-Q craniofacial questionnaire, which includes the paralysis module, was translated. 213 patients with facial palsy completed the German FACE-Q paralysis along with the established FDI and FaCE questionnaires. Regression analyses were performed to examine the relationships between the different FACE-Q domains and patient and therapy characteristics. The FACE-Q scales had high internal consistency (Cronbach’s alpha all > 0.6). High correlations were found between the FACE-Q and the FDI and FaCE (mean rho = 0.5), as well as within the FACE-Q (mean rho = 0.522). Unifactorial influences were found for all domains except Breathing (all p < 0.05). Multivariate independent predictors were found for some FACE-Q domains. Most influential predictors (> 8 subdomains): Patients who received physical therapy scored lower in ten subdomains than those who did not (all p < 0.05). Patients who had surgery scored lower in nine subdomains than patients without surgery (all p < 0.05). The German version of the FACE-Q Paralysis Module can now be used as a patient-reported outcome instrument in adult patients with facial nerve palsy.

Quality of Life After Proximal Femoral Fractures Treated With Gamma Nail in Sudan.

Background Hip fracture is a public health problem globally, and it poses one of the biggest challenges in healthcare due to its associated complications. Objectives The aim of this study is to investigate the quality of life in adult patients in Khartoum State, Sudan, after they have undergone treatment using a gamma nail for proximal femoral fractures. Methodology This cross-sectional descriptive hospital-based study was conducted at Ibrahim Malik, Omdurman, and Bahri Teaching Hospitals over six months, from April to October 2022. The data were collected using an interview questionnaire that covered relevant aspects of the study. The data were analyzed using IBM SPSS Statistics for Windows, V. 26.0 (IBM Corp., Armonk, NY). The study was approved by the Sudan Medical Specialization Board, and ethical clearance was obtained. Results The study included 37 patients. More than half of the patients (59.5%, n=22) were women. The mean age of cases was 66.7 years (standard deviation, ±15.6). The mean time from the time of the fracture to the time of surgery was eight days (±15). Twenty-three (62.2%, n=23) (JRB1) of the patients started weight bearing on the second postoperative day. Regarding the health-related quality of life, 21.6% of the patients had a good health-related quality of life, 67.6% had a fair health-related quality of life, and 10.8% had a poor health-related quality of life. None of the patients reported an excellent quality of life. Based on the Oxford Hip Score, 54.1% of the patients had satisfactory joint function, 29.7% had mild to moderate hip joint function, 13.5% had moderate to severe hip joint function disturbance, and one patient (2.7%) had severe hip joint function problems. Conclusion In this study, the vast majority of the patients who underwent gamma nail surgery for hip fracture had quality of life scores in the fair to good range afterward. The results indicate that nailing is associated with good outcomes regarding quality of life and is an acceptable option for femoral fracture surgeries in Sudan.

Oral Lesions and Oral Health-Related Quality of Life in Adult Patients with Psoriasis: A Retrospective Chart Review.

Psoriasis is a widespread chronic inflammatory skin disease, that negatively affects physical and emotional well-being and quality of life, as shown by the generally low Dermatology Life Quality Index (DLQI). Psoriasis is burdened by associated comorbidities and some patients manifest concurrent oral lesions, although the existence of oral psoriasis remains controversial. Psoriasis-specific and nonspecific oral lesions and Oral Health-Related Quality of Life (OHRQoL), self-assessed using the Oral Health Impact Profile-14 (OHIP-14) questionnaire, were retrospectively reviewed in adult untreated psoriasis patients with ≥15 teeth, who were non-smokers and had no dental or periodontal infections. Sample (age, gender, comorbidities) and descriptive variables (Body Surface Area-BSA, Psoriasis Area and Severity Index-PASI, Dermatology Life Quality Index-DLQI, severity of psoriasis, distribution of lesions and predominant involvement, years since diagnosis) were correlated with DLQI and OHIP-14 and compared by baseline DLQI and OHRQoL classes. Charts from 90 participants were included. No oral lesions were detected, and excellent/good OHRQoL was found in 94% of the participants. DLQI scores displayed positive significant associations with PASI and BSA, while OHIP-14 with hypertension and IMID, and age. PASI and BSA were significantly higher in participants with DLQI > 10 and also differed significantly among OHQRoL ranks, as well as mucosal involvement and comorbidities. Specifically, among subjects revealing an Excellent OHQRoL, 92.6% were non-IMID, 75% non-hypertensive, 89.7% non-diabetic subjects, 86.8% of non CVD-subjects.

Quality of Life in Adult Patients with Relapsed/Refractory B-Cell Acute Lymphoblastic Leukemia Treated with Obecabtagene Autoleucel (obe-cel) in the Pivotal Phase 2 Felix Study

Quality of Life in Adult Patients with Relapsed/Refractory B-Cell Acute Lymphoblastic Leukemia Treated with Obecabtagene Autoleucel (obe-cel) in the Pivotal Phase 2 Felix Study

Rasch analysis of the dermatology life quality index (DLQI) in patients with mild to moderate-severe psoriasis.

Background The Dermatology Life Quality Index (DLQI) is a valuable tool for assessing the quality of life in adult patients with psoriasis. Aims To analyse the reliability and validity of the DLQI to measure the quality of life in patients with mild to moderate-severe psoriasis. Methods This was a secondary validation study nested in a follow-up study. The Rasch-Andrich model was utilised to perform response function, item and person fit, differential item functioning, dimensionality, and reliability analyses. Results A total of 1439 patients were analysed, 52.1% male, mean age of 48.7 years (SD 16.1). Psoriasis vulgaris was the phenotype in 43.1% of patients, and 86% had a mild Psoriasis Area Severity Index (PASI). Adequate adjustment of the response function and the items was observed in the best-fit sample, except for item 7 (work and study). The measure explained 60.9% of the variance and presented a reliability of 0.86. Differential item functioning was identified by age, with a relevant bias in the estimation for older adults. Item-person maps are provided. Limitations This study was performed at a single centre, with most patients presenting a mild PASI score, limiting generalisation of the findings. Conclusion The validity evidence favours the use of the DLQI in moderate-severe psoriasis. However, the instrument biases the estimate of older adults. This population group should consider a specific version of the instrument.

Latin-American consensus on the transition into adult life of patients with X-linked hypophosphatemia

IntroductionX-linked hypophosphatemia is an orphan disease of genetic origin and multisystem involvement. It is characterized by a mutation of the PHEX gene which results in excess FGF23 production, with abnormal renal and intestinal phosphorus metabolism, hypophosphatemia and osteomalacia secondary to chronic renal excretion of phosphate. Clinical manifestations include hypophosphatemic rickets leading to growth abnormalities and osteomalacia, myopathy, bone pain and dental abscesses. The transition of these patients to adult life continues to pose challenges to health systems, medical practitioners, patients and families. For this reason, the aim of this consensus is to provide a set of recommendations to facilitate this process and ensure adequate management and follow-up, as well as the quality of life for patients with X-linked hypophosphatemia as they transition to adult life.Materials and MethodsEight Latin American experts on the subject participated in the consensus and two of them were appointed as coordinators. The consensus work was done in accordance with the nominal group technique in 6 phases: (1) question standardization, (2) definition of the maximum number of choices, (3) production of individual solutions or answers, (4) individual question review, (5) analysis and synthesis of the information and (6) synchronic meetings for clarification and voting. An agreement was determined to exist with 80% votes in favor in three voting cycles.Results and DiscussionTransition to adult life in patients with hypophosphatemia is a complex process that requires a comprehensive approach, taking into consideration medical interventions and associated care, but also the psychosocial components of adult life and the participation of multiple stakeholders to ensure a successful process. The consensus proposes a total of 33 recommendations based on the evidence and the knowledge and experience of the experts. The goal of the recommendations is to optimize the management of these patients during their transition to adulthood, bearing in mind the need for multidisciplinary management, as well as the most relevant medical and psychosocial factors in the region.

Oral Health-Related Quality of Life in Adult Patients with Depression or Attention Deficit Hyperactivity Disorder (ADHD).

The aim of this cross-sectional study was the evaluation of the oral health-related quality of life (OHRQoL) in patients with depression or attention-deficit/hyperactivity disorder (ADHD) in comparison with a group of mentally healthy individuals. Patients from the Department of Psychiatry and Psychotherapy, University of Leipzig, Germany, were recruited. A healthy comparison group (HC) was recruited from the Department of Cariology, Endodontology and Periodontology. The OHRQoL was assessed using the Oral Health Impact Profile G14 (OHIP G14). Furthermore, a questionnaire regarding oral hygiene behaviour was applied. A total of 141 patients with depression or ADHD (depression n = 94, ADHD n = 47) and 145 HC individuals with a balanced age and gender distribution were surveyed. OHIP G14 median scores were significantly higher in the overall psychiatric patient group compared to HC (5.00 vs. 0.00, p < 0.001). This was also found for the four dimensions of OHIP G14 (p < 0.001). The OHIP G14 sum score of patients with depression and ADHD was comparable (5.00 vs. 6.50, p = 0.302). A significant association among psychiatric patients between smoking, gum bleeding, professional tooth cleaning, oral health education, interdental cleaning, and elevated OHIP scores was found (p < 0.001). In conclusion, patients with depression and adults with ADHD show a reduced OHRQoL. A contradictory association between oral hygiene/oral health behaviour and OHRQoL supports the hypothesis of a changed perception of oral conditions in patients with mental diseases. Interdisciplinary collaboration between psychiatric specialists and dentists should be fostered.

Influence of age and severity of Lenke 5 or 6 idiopathic scoliosis on postoperative quality of life in adult patients

IntroductionThoracolumbar adolescent idiopathic scoliosis can continue to progress beyond skeletal maturity. Ideal timing of surgery remains undefined. Earlier intervention, with shorter instrumentation, incurs early partial loss of lumbar motion. Waiting for progression incurs a greater risk of extensive arthrodesis. The aim of the present study was to assess the quality-of-life impact of age and scoliosis severity at surgery. Material and methodsPatients with Lenke 5 or 6 adolescent idiopathic scoliosis, aged 16–45years, were analyzed based on a prospective clinical registry. Oswestry Disability Index (ODI) and Scoliosis Research Society (SRS)-22 scores were collected preoperatively and at 6months, 1year and 2years. Coronal and sagittal alignments were measured on full-spine radiographs, and curve flexibility was assessed on bending radiographs. A mixed linear model was used to assess the impact of age, Cobb angle and flexibility on quality of life. ResultsThirty-six patients were included. Mean ODI was 20.5% preoperatively and 13.8% at 2years (p=0.017). Mean SRS-22 was 3.2 preoperatively and 3.9 at 2years (p<0.001). Mean Cobb angle was 56.6° preoperatively and 23.2° at 2years (p<0.001), with mean preoperative reducibility of 68.1%. Age and ODI correlated preoperatively (r=0.6; p<0.001) and at 6months (r=0.5; p=0.002), as did age and SRS-22 (r=–0.6; p<0.001 and r=–0.6; p<0.001, respectively). Linear regression found a significant negative correlation between thoracolumbar Cobb angle and change in SRS-22 at 6months. DiscussionIn 16–45 year-olds with Lenke 5 or 6 idiopathic scoliosis, age influenced SRS-22 score. Younger patients had better quality of life both pre- and post-operatively. Curve magnitude influenced postoperative score. The present study suggests that early surgical correction in younger patients, where instrumentation can be shorter, does not impair quality of life. Level of evidenceIV; prospective registry study.

Physical function in children/adolescents with chronic kidney disease and the impact of exercise intervention: a protocol for systematic review and meta-analysis

IntroductionImpaired physical function is relatively common in children/adolescents with chronic kidney disease (CKD), affecting not only patients’ daily lives but also the efficiency of later treatment and rehabilitation. Exercise is...

Investigating the Quality of Life in Adult Patients with Self-reported Halitosis

Halitosis is a symptom in which a noticeably unpleasant breath odor is present. Most adults suffer from it. It is one of the reasons to refer to dental clinics. Since bad breath makes individuals stressed, recognizing and evaluating its causes to decrease or remove this symptom is of high importance. When bad breath is severe it causes depression, reducing self-confidence, and sociality in individuals. Furthermore, it causes academic failure in children. Thus it can affect individuals’ quality of life. The current study aimed at investigating the quality of life in patients with self-reported halitosis. In this descriptive cross-sectional study the quality of life in patients with self-reported halitosis was investigated using the HALT-18 questionnaire. 189 patients referred to the dental clinic of Golestan University of Medical Sciences aged 15 and above with self-reported halitosis were selected via convenience sampling. Participants were investigated using a questionnaire. Data were entered in STATA version 14 and were analyzed via descriptive statistics (mean, standard deviation, percentage, and frequency), analysis of variance, and independent T-test. The level of significance was set at P=0/05. The overall average quality of life in patients was 38/65 ± 10/23, 38/77±10/49 for women, and 38/9±45/84 for men. There was not a significant relation between the quality of life and age, occupation, and education. The score of the quality of life in patients is average. Since it has some negative effects on daily life, and social and individual relationships, recognition and therapeutic interventions should be done to improve patients’ quality of life.

Quality of life of adult patients with hereditary fructose intolerance

BackgroundAlthough patients with hereditary fructose intolerance (HFI) generally have a good prognosis on a fructose-restricted diet, relatively little is known about their quality of life. The aim of this study was to investigate the quality of life in adult patients with HFI in comparison to patients with dietary-treated, classical phenylketonuria (PKU). MethodsPatients with HFI and patients with classical PKU were recruited from the adult metabolic centers in The Netherlands and Belgium and via social media. Patients were asked to fill out the 36-item Short Form Health survey (SF-36) and a modified PKU Quality Of Life (PKU-QoL) questionnaire. ResultsPatients with HFI (n = 19) did not report any restrictions in their health-related quality of life, except for vitality and general mental health, which were scored more unfavorable compared to patients with PKU (n = 19) (p < 0.05, adjusted for level of education and country of origin). The results from the modified PKU-QoL demonstrated a statistically significantly greater impact of the disease in the social domain in HFI. A substantial proportion of both HFI and PKU patients (21%) reported a great to severe emotional impact of their disease. Finally, patients with HFI experienced statistically significantly less food temptations, less guilt if dietary restrictions not followed, and less overall difficulty following dietary restrictions. ConclusionsAlthough patients with HFI showed to have a generally good quality of life, they scored lower on vitality and general mental health, and reported a greater social impact of the disease. These aspects deserve further study and clinical attention.

Long-term health consequences of congenital adrenal hyperplasia.

Congenital adrenal hyperplasia (CAH) caused by 21-hydroxylase deficiency accounts for 95% of all CAH cases and is one of the most common inborn metabolic conditions. The introduction of life-saving glucocorticoid replacement therapy 70 years ago has changed the perception of CAH from a paediatric disorder into a lifelong, chronic condition affecting patients of all age groups. Alongside health problems that can develop during the time of paediatric care, there is an emerging body of evidence suggesting an increased risk of developing co-morbidities during adult life in patients with CAH. The mechanisms that drive the negative long-term outcomes associated with CAH are complex and involve supraphysiological replacement therapies (glucocorticoids and mineralocorticoids), excess adrenal androgens both in the intrauterine and postnatal life, elevated steroid precursors and adrenocorticotropic hormone levels. Alongside a review of mortality outcome, we discuss issues that need to be addressed when caring for the CAH patient including female and male fertility, cardio-metabolic morbidity, bone health and other important long-term outcomes of CAH.