Investigation on quality of life in patients with inflammatory bowel disease and their family members in Fujian Province

正Objective To investigate the quality of life(QOL)and its main influencing factors in patients with inflammatory bowel disease(IBD)and their families members in Fujian Province,and to provide an evidence for guiding the clinical strategy.Methods From September 2015to March 2016,114 IBD patients who met the standards,their 97 family members,and 113 irritable bowel syn-     

Surgical innovations: impact on the quality of life of the older patient

As surgery has been extended into the elderly population, health-related quality of life (HRQOL) has been appropriately added as a parameter to evaluate surgical success. Surgery remains of significant risk in older patients, and an estimate of the type of outcome, including morbidity, mortality, and HRQOL can aid in that decision. New techniques, such as laparoscopic or minimally invasive surgery show great promise for reduction in perioperative stress and improved HRQOL in younger patients, but have not been extensively used in the older and frail patients for whom the benefits potentially may be greater.     

The impact of quality of family life on drug consumption

The nuclear family, particularly its role modeling during primary socialization, is found to exert an influence as strong as or stronger than the more stock-in-trade factors typically used for explaining alcohol and drug ingestion. With regard to the general North Queensland population quality of family life, past and current parental drinking are of almost equal importance.     

The impact of hearing loss on quality of life in older adults

PURPOSE: The authors investigate the impact of hearing loss on quality of life in a large population of older adults. DESIGN AND METHODS: Data are from the 5-year follow-up Epidemiology of Hearing Loss Study, a population-based longitudinal study of age-related hearing impairment conducted in Beaver Dam, WI. Participants (N = 2,688) were 53-97 years old (mean = 69 years) and 42% were male. Difficulties with communication were assessed by using the Hearing Handicap for the Elderly-Screening version (HHIE-S), with additional questions regarding communication difficulties in specific situations. Health-related quality of life was assessed by using measures of activities of daily living (ADLs), instrumental ADLs (IADLs) and the Short Form 36 Health Survey (SF-36). Hearing loss measured by audiometry was categorized on the basis of the pure-tone average of hearing thresholds at 0.5, 1, 2, and 4 kHz. RESULTS: Of participants, 28% had a mild hearing loss and 24% had a moderate to severe hearing loss. Severity of hearing loss was significantly associated with having a hearing handicap and with self-reported communication difficulties. Individuals with moderate to severe hearing loss were more likely than individuals without hearing loss to have impaired ADLs and IADLs. Severity of hearing loss was significantly associated with decreased function in both the Mental Component Summary score and the Physical Component Summary score of the SF-36 as well as with six of the eight individual domain scores. IMPLICATIONS: Severity of hearing loss is associated with reduced quality of life in older adults.     

家属同步健康教育对腹膜透析患者生活质量的影响

目的探讨对患者家属实施同步健康教育对腹膜透析患者生活质量的影响。方法对118例尿毒症患者按照住院先后顺序编号,单号为观察组,双号为对照组,两组患者在腹膜透析初期均给予常规健康教育,观察组在此基础上对患者家属实施同步健康教育。采用SF-36生存质量表分别于腹膜透析0月和6个月测评患者生活质量。结果规律腹膜透析6个月后观察组生活质量明显高于对照组（P〈0．01）,尤其在社会功能、情感职能和精神健康3个维度得到明显的改善,观察组复职率为24％明显高于对照组的11％（P〈0．05）。在组内比较,规律腹膜透析6个月后患者生活质量高于透析初始阶段（P〈0．05）。结论对家属实施同步健康教育能够显著提高患者生活质量及复职率,是一种可行的治疗途径。     

Quality of life impact of urge incontinence in older persons: a new measure and conceptual structure.

OBJECTIVE: To develop a condition-specific measure for assessing the impact of urge urinary incontinence (UI) on the quality of life (QoL) of older persons. DESIGN: A 32-item Urge Impact Scale (URIS) was drafted using content area data from focus groups composed of urge incontinent older persons. Pilot testing in 21 urge incontinent persons (mean age 67.7 years) resulted in the elimination of eight items by internal consistency, skew, and patient response criteria. The resulting scale (URIS-24) was tested for reliability (internal consistency and test-retest correlation) and construct validity (correlation with UI severity from voiding records) in a separate group of 27 urge incontinent persons (89% women, mean age 72 years). Factor analysis of URIS-24 data from the combined 48 persons was used to explore the conceptual structure underlying urge UI-related QoL. SETTING: University-affiliated community-based practice and tertiary hospital. PARTICIPANTS: Community-dwelling women and men, older than age 60 and with urge incontinence at least twice weekly, recruited from newspaper, newsletter, and radio advertisements. RESULTS: Cronbach's alpha for URIS-32 was 0.84, and for URIS-24 it was 0.94. When administered (mean +/- standard deviation) 9.2 +/- 5.1 days apart, URIS-24 had good test-retest reliability for total scores (interclass coefficient = .88, concordance coefficient = .88), and individual item scores at time 2 were within 1 point (on a 5-category Likert scale) of time 1 answers for 89% of responses. URIS-24 scores had modest but nearly significant correlation with the number of UI episodes (r = -0.39, P = .05). Factor analysis revealed a three component structure corresponding to psychological burden, perception of personal control, and self concept. CONCLUSIONS: The URIS-24 is an internally-consistent, highly reproducible tool for the assessment of the QoL impact of urge UI on older persons. It can be used to evaluate QoL impact by specific items as well as by overall score. Compared with other UI-specific QoL measures, the URIS-24 had similar or superior internal consistency, test-retest reliability, and validity, but it is the first measure designed and tested specifically for older persons with urge UI. These results also highlight the multifactorial structure of urge UI-related QoL and the importance of its psychological dimensions.     

Individualized measurement of quality of life in older adults: development and pilot testing of a new tool

We describe theoretical background, development, and piloting of a measure for quality of life in older adults that specifically takes into account the subjective perspective. Although quality of life is usually subjectively assessed, normative thresholds for “the good life” are most often set by a third party. The new tool FLQM asks for respondents to name, rate, and weight those domains in life that are most important for their life-satisfaction solely from their own point of view. Construct validity was pilot-tested in two samples of elders (N ₁ = 44; N ₂ = 90). Correlations were in the medium range in both studies and support the questionnaire’s validity. There were no age or gender differences on total score. However, in Study 1 as well as in Study 2 older subjects named significantly fewer domains than did younger participants. Further, in Study 1 the overall number of distinct domains generated by the participants diminished with age—the “interindividual pool of domains” shrank. Implications of this age-associated narrowing of domainscope are discussed on a background of adaptation theories. Concluding, the new questionnaire seems apt to assess older peoples’ quality of life even in a physically very ill population, but needs further testing, especially regarding its reliability. This is currently being undertaken in a larger longitudinal sample to assure psychometric properties.     

Structured ambivalence in grandchild care and the quality of life among European grandparents

This study employs the concept of structured ambivalence to analyse the effect of grandchild care on quality of life (QoL) in different cultural contexts. We define structured ambivalence as the contradiction between behaviour and cultural norms. The analysis is based on the Survey of Health, Ageing and Retirement in Europe with 14 countries in the sample. We focus on grandparents aged 50 and over with at least one grandchild 12 years old or younger (n = 12,740). In countries with high grandparent obligations, grandparents who did not look after their grandchildren reported a lower quality of life. Compliance with such grandparental obligations (e.g. providing grandchild care in a country with high grandparent obligations) was found to increase the QoL of grandparents. Family policy should consider family practices that better match the realities of current grandparents’ lives in order to reduce structured ambivalence and increase the QoL of grandparents.     

Motives for residential mobility in later life: post-move perspectives of elders and family members

This qualitative study delineates motives for residential mobility, describes dynamics between the elder and family members during the move decision process, and locates the move decision within ecological layers of the aging context. Interviews were conducted with 30 individuals and couples (ages 60-87) who experienced a community-based move within the past year, and with 14 extended family members. Reasons for moving (from perspectives of both elders who moved and their family members) were grouped into four themes and eleven issues that influenced the move decision. These themes parallel the ecological context of individual health and functioning, beliefs and attitudes, physical environment, and social pressures. Late-life mobility is a significant life transition that is the outcome of an ongoing appraisal and reappraisal of housing fit with individual functioning, needs, and aspirations. Family members are an integral part of these decision and residential mobility processes.     

The impact of acute myeloid leukemia and its treatment on quality of life and functional status in older adults

Although intensive chemotherapy (IC) may modestly improve survival compared to supportive care in older people with acute myeloid leukemia (AML), treatment may worsen quality of life (QOL) and functional status. We assessed QOL and functional status at baseline, 1 month, 4 months, and 6 months in 65 consecutive, English-speaking, patients age 60 or older with newly diagnosed AML. At baseline, functional status was high but QOL was negatively affected in global health and most QOL domains. Over time, QOL remained stable or improved in most patients and was generally similar between IC and non-IC groups. Basic activities of daily living (ADL) scores did not change over time, whereas instrumental ADL scores declined slightly regardless of treatment. Receiving IC does not appear to lead to worse QOL or functional status than more palliative approaches. This information may aid treatment discussions in older patients with AML.     

Measuring the impact of increased exercise on quality of life in older adults: the UQQoL,a new instrument

The University of Queensland Quality of Life instrument (UQQoL) was developed to provide a quantitative measure sensitive to the impact of increased exercise on the quality of life (QoL) of older individuals. This paper describes the development and testing of the UQQoL including an exploratory study of focus group interviews with 18 participants aged 65 and over, item development and selection, and instrument piloting with groups of older adults undergoing high-intensity training. The SF-36, another established QoL tool, was also administered at the same time points for comparative purposes. The UQQoL displayed good convergent validity with selected SF-36 domains. A significant change in QoL following training was found, complementing functional improvements. This change was not detected by the SF-36. While broader testing is required, the UQQoL appears to be a reliable instrument sensitive to the change in QoL experienced by healthy community-dwelling older adults following resistance exercise.     

Quality of life perceived by chronic haemodialysis patients and family members

In this study quality of life perceived by 100 haemodialysis patients with family members' viewpoints on the patients' quality of life was studied. The SF-36 was used as the main measurement tool. According to the findings of the study the quality of life scores, perceived by patients, usually ranged between average and below average. The family members perceived patients' social functioning and functional status in the SF-36 more pessimistically but vitality and well-being in the SF-36 more optimistically, when compared to the patients. In the light of the findings obtained from the study, it is suggested to periodically assess the quality of life of haemodialysis patients considering the viewpoints of family members on the patients' quality of life.     

Developing and testing a model of quality of life among chronically-ill,community-dwelling older adults: A structural equation model

PurposeAlthough healthy ageing aims for better quality of life, the inability of older adults to adequately care for themselves and their health impair the realization of such objective. Moreover, in a collectivist community like the Philippines, the family, community, and Transcendent are inseparable in promoting quality of life. This study developed and tested a model of quality of life (QoL) among chronically-ill, community-dwelling older adults.Materials and MethodsFrom August to November 2017, a cross-sectional study of 304 chronically-ill, community-dwelling older adults from selected rural communities in the Philippines was conducted. Respondents completed a five-part survey packet composed of the socio-demographic profile, modified Older People’s Quality of Life, Spirituality Assessment Scale, Hypertension Self-Care Profile, and Diabetes Self-Management Questionnaire.ResultsSocio-demographics, community satisfaction, spirituality, and disease self-management accounted 29.00% of QoL, generating a good model (χ²/df = 1.44, RMSEA = 0.038, and PNFI = 0.64). Spirituality (β = 0.34, p < 0.01) was the strongest predictor of QoL, while community satisfaction had both direct (β = 0.26, p < 0.01) and indirect (β = 0.08, p < 0.01) effects. Disease self-management directly (β = 0.15, p = 0.016) influenced QoL. In contrast, longer chronicity and larger family size impair QoL.ConclusionQuality of life among chronically-ill, community-dwelling older adults is a multi-faceted health construct influenced by socio-demographics, disease self-management, community satisfaction, and spirituality. The presented model highlights the positive effect of disease self-management, community satisfaction, and spirituality which can be utilized in developing appropriate community-based geriatric strategies, policies, and programs. Further, forming collaborative groups with socially-active community elderly and community-based self-care programs can be ventured to address the needs of older adults.     

Treatment of CML using IFN-alpha: impact on quality of life

Treatment of chronic myeloid leukaemia (CML) with IFN-alpha (IFN) is known to confer significant survival benefit, but the drug's impact on quality of life (QoL) in CML is unclear. We describe a cross-sectional comparison of QoL in patients randomised to long-term treatment with IFN versus no IFN within the UK MRC CML 3 trial, assessing the long-term consequences and psychosocial side effects of IFN therapy. Patients completed the EORTC QoL QLQ-C30, an in-house leukaemia/IFN questionnaire, a brief assessment of sexual functioning and demographic details. In total, 163 eligible patients completed questionnaires (85% response). Patients receiving IFN reported significantly worse QoL for emotional, cognitive and social functioning, pain and dyspnoea (P<0.01), and marginally worse fatigue, nausea and vomiting (P<0.05). As expected from other IFN use, those on IFN experienced more flu-like and febrile symptoms and skin problems than those not on IFN. In all, 35% of patients stopped IFN before questionnaire completion. This made no material difference to the results, except that those continuing on IFN had slightly better self-assessed Global health/QoL than those who had stopped (P<0.03). IFN treatment adversely affected sexual health after allowing for age and gender. In conclusion, IFN treatment has a significant adverse impact on QoL. Patient awareness of the survival benefits and these QoL effects should enable better-informed decision-making. The impact on QoL of IFN dose, and of imatinib therapy versus IFN in early CP CML, are being investigated. QoL will need evaluating in future studies of combination treatment (IFN+imatinib).     

Obstructive sleep apnea, nasal congestion, and snoring: their systemic effects and impact on quality of life.

A literature review was conducted to evaluate the available published data on sleep-related breathing disorders with a focus on obstructive sleep apnea (OSA) syndrome, nasal congestion, and snoring. The MEDLINE database was used to obtain pertinent reviews and articles. The pathophysiology of snoring, a partial blockage of the airway, and of apnea or total airway obstruction, is described. Contributing factors to the etiology of the OSA syndrome as well as current methods of diagnosis are discussed. Adverse systemic sequelae of the OSA syndrome, especially those pertaining to the cardiovascular and respiratory systems, are detailed. Treatment options, both nonsurgical and surgical, which are used to improve the quality of life of patients with these disorders, are presented also.     

Living with cystic fibrosis: impact on global quality of life

BACKGROUND: Because of better health care, most people with cystic fibrosis (CF) now survive into adulthood, raising issues related to quality of life. Few studies have focused on satisfaction with broader life domains in people with CF. The aim of this article was to examine the impact of living with CF from a global quality of life perspective. METHODS: The sample consisted of 86 adults with CF recruited from the Norwegian Competence Centre for Cystic Fibrosis and a control group of 1021 individuals from the general population (GP). The Norwegian version of the Quality of Life Scale was used to measure global quality of life (satisfaction with broader life domains) in both groups. RESULTS: The mean global quality of life score was 84.88 for the CF group and 83.33 for the GP group. This difference was significant after controlling for age, sex, educational level, and marital status, indicating that people with CF have better global quality of life. The groups also differed significantly on other specific measures of life satisfaction. Persons with forced expiratory volume in 1 second values below 30% of predicted values reported the lowest mean global quality of life value. CONCLUSIONS: These results suggest the existence of a type of response shift in the CF group through changes in life standards and goals. However, people with CF who have low forced expiratory volume in 1 second values may need special attention from health care professionals on issues related to global quality of life.