scholarly journals Quality of life and better than well: a mixed method study of long-term (post five years) recovery and recovery capital

2018 ◽  
Vol 18 (4) ◽  
pp. 217-226
Author(s):  
Andrew Collins ◽  
Alison McCamley
Keyword(s):  
Quality Of Life ◽  
General Population ◽  
Population Group ◽  
Mutual Aid ◽  
Life Measure ◽  
Content Type ◽  
General Population Group ◽  
Recovery Group

Purpose The purpose of this paper is to compare quality of life scores in a long-term recovery population group (post five years) with a general population group and to explore how any differences might be explained by recovering individuals themselves in a small number of follow up qualitative interviews. Design/methodology/approach A sequential explanatory mixed method design combining quantitative quality of life measure (WHOQOL-BREF, 1996) and six subsequent semi-structured individual interviews. The quality of life measure compared long-term recovery scores (post five years) with the general population group. The subsequent qualitative semi-structured interviews explored what the participants themselves said about their recovery. Findings The quantitative data provide evidence of a significant difference in quality of life (WHOQoL-BREF) in two domains. The long-term recovery group (five or more years into recovery) scored higher in both the environment and psychological domains than the general population group. Of the long-term recovery group, 17 people who still accessed mutual aid scored higher in all four domains than those 23 people who did not. The interviews provide evidence of the this difference as result of growth in psychological elements of recovery, such as developing perspective, improvement in self-esteem, spirituality, as well as contributing as part of wider social involvement. Research limitations/implications This study provides support for the quality of life measure as useful in recovery research. The empirical data support the concept of recovery involving improvements in many areas of life and potentially beyond the norm, termed “better than well” (Best and Lubman, 2012; Valentine, 2011; Hibbert and Best, 2011). Limitations: snowballing method of recruitment, and undertaken by public health practitioner. Some suggestions of women and those who attend mutual aid having higher quality of life but sample too small. Practical implications Use QoL measure more in recovery research. Public health practitioners and policy makers need to work with partners and agencies to ensure that there is much more work, not just treatment focused, addressing the wider social and environmental context to support individuals recovering from alcohol and drugs over the longer term. Originality/value One of small number of studies using with participants who have experienced long-term (post five years) recovery, also use of quality of life measure (WHOQOL-BREF, 1996) with this population.

Radiosurgery of vestibular schwannomas: summary of experience in 829 cases

2005 ◽  
Vol 102 ◽  
pp. 195-199 ◽  
Author(s):  
L. Dade Lunsford ◽  
Ajay Niranjan ◽  
John C. Flickinger ◽  
Ann Maitz ◽  
Douglas Kondziolka
Keyword(s):  
Quality Of Life ◽  
Gamma Knife ◽  
Cranial Nerve ◽  
Vestibular Schwannomas ◽  
Tumor Control ◽  
Content Type ◽  
Dose Planning ◽  
Fine Print

Object.Management options for vestibular schwannomas (VSs) have greatly expanded since the introduction of stereotactic radiosurgery. Optimal outcomes reflect long-term tumor control, preservation of cranial nerve function, and retention of quality of life. The authors review their 15-year experience.Methods.Between 1987 and 2002, some 829 patients with VSs underwent gamma knife surgery (GKS). Dose selection, imaging, and dose planning techniques evolved between 1987 and 1992 but thereafter remained stable for 10 years. The average tumor volume was 2.5 cm3. The median margin dose to the tumor was 13 Gy (range 10–20 Gy).No patient sustained significant perioperative morbidity. The average duration of hospital stay was less than 1 day. Unchanged hearing preservation was possible in 50 to 77% of patients (up to 90% in those with intracanalicular tumors). Facial neuropathy risks were reduced to less than 1%. Trigeminal symptoms were detected in less than 3% of patients whose tumors reached the level of the trigeminal nerve. Tumor control rates at 10 years were 97% (no additional treatment needed).Conclusions.Superior imaging, multiple isocenter volumetric conformal dose planning, and optimal precision and dose delivery contributed to the long-term success of GKS, including in those patients in whom initial microsurgery had failed. Gamma knife surgery provides a low risk, minimally invasive treatment option for patients with newly diagnosed or residual VS. Cranial nerve preservation and quality of life maintenance are possible in long-term follow up.

The impact of job status on quality of life: general population versus long-term cancer survivors

2015 ◽  
Vol 24 (11) ◽  
pp. 1552-1559 ◽  
Author(s):  
Seo Yoon Lee ◽  
Sun Jung Kim ◽  
Jaeyong Shin ◽  
Kyu-Tae Han ◽  
Eun-Cheol Park
Keyword(s):  
Quality Of Life ◽  
General Population ◽  
Cancer Survivors ◽  
Job Status ◽  
The Impact

Long-term benefits in quality of life provided by bilateral subthalamic stimulation in patients with Parkinson disease

2005 ◽  
Vol 103 (2) ◽  
pp. 252-255 ◽  
Author(s):  
Kelly E. Lyons ◽  
Rajesh Pahwa
Keyword(s):  
Quality Of Life ◽  
Parkinson Disease ◽  
Motor Function ◽  
Well Being ◽  
Strongly Correlated ◽  
Content Type ◽  
Fine Print

Object. The goals of this study were to evaluate long-term benefits in quality of life in patients with Parkinson disease (PD) after bilateral deep brain stimulation (DBS) of the subthalamic nucleus (STN) and to evaluate the relationship between improvements in motor function and quality of life. Methods. Seventy-one patients who received bilateral STN stimulation implants and participated in follow-up review for at least 12 months were included in the study. Fifty-nine patients participated in a 12-month follow-up review and 43 patients in a follow-up review lasting at least 24 months. Patients' symptoms were assessed preoperatively by using the Unified PD Rating Scale (UPDRS) in the “medication-on” and “medication-off” conditions and quality of life was examined using the 39-item PD Questionnaire (PDQ-39). Patient evaluations were repeated postoperatively during periods of stimulation. The UPDRS activities of daily living (ADL) and motor scores as well as the PDQ-39 total, mobility, ADL, emotional well-being, stigma, and bodily discomfort scores were significantly improved at 12 months compared with baseline scores; the UPDRS ADL and motor scores as well as the PDQ-39 total, mobility, ADL, stigma, and bodily discomfort scores were significantly improved at the longest follow-up examination compared with baseline scores. There was a strong correlation between UPDRS motor and ADL scores and the PDQ-39 total, mobility, and ADL scores. Further analyses indicated that improvements in tremor were only correlated with PDQ-39 ADL subscale scores and rigidity was not correlated with any aspect of quality of life. Nevertheless, bradykinesia was strongly correlated with improvements in the PDQ-39 total, mobility, and ADL scores. Conclusions. Improvements in quality of life following bilateral DBS of the STN are maintained in the long term. These improvements are strongly correlated with improvements in motor function, primarily with regard to bradykinesia.

scholarly journals Quality of Life and Life Satisfaction in AML Long-Term Survivors: Primary Results of the AMLCG-Survivorship Study

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 2289-2289
Author(s):  
Eva Telzerow ◽  
Dennis Görlich ◽  
Maja Rothenberg-Thurley ◽  
Maria Cristina Sauerland ◽  
Anna Sophia Moret ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Life Satisfaction ◽  
General Population ◽  
Research Funding ◽  
Well Being ◽  
Advisory Committees ◽  
Health Related ◽  
Long Term Survivors

Abstract Introduction An increasing proportion of patients with Acute Myeloid Leukemia (AML) become long-term survivors. Somatic and psycho-social outcomes are therefore becoming increasingly important, but little is known about the long-term effects of the disease and its treatment. Methods We designed a comprehensive analysis of AML survivorship outcomes including psycho-social well-being and somatic health status and conducted a questionnaire-based study collecting data from AML long term survivors (AML-LTS) and their physicians. This report focuses on overall and health-related quality of life. Somatic, especially cardiovascular, morbidity in AML-LTS are reported separately (Moret et al.). The primary aim of this study was to compare quality of life (QoL, measured by the FACT-G questionnaire) and general and health-related life satisfaction (gLS/hLS, measured by the FLZ-M questionnaire) of AML-LTS with normative data of German adults who were not diagnosed with AML (Holzner et al. 2009; Daig et al. 2009). FLZ-M and FACT-G scores were standardized relative to the normal population mean and standard deviation, stratified by sex and age. These z-scores were then tested against the fixed value 0 (indicating no difference between AML-LTS and the general population) using Mann-Whitney U-tests. Our statistical design incorporated a sequentially rejective testing procedure to maintain the multiple testing significance level at 5%, using a graphical model as described by Bretz et al. (2009). Results 427 former AML patients who had been enrolled in AMLCG trials (AMLCG-1999, AMLCG-2004, AMLCG-2008) or the AMLCG patient registry, participated in this study between 5 and 18.6 years [y] after their initial AML diagnosis (median, 11.3y). Median age of AML-LTS was 61y (range 28y-93y), and 56% were female. Thirty-eight percent of participants had been treated with chemotherapy alone, while 62% received at least one allogeneic stem cell transplant (alloSCT). A relapse occurred in 24% of the participants. Unexpectedly, quality of life and general life satisfaction summary scores were significantly higher in AML-LTS (p<.001) compared to adults without the diagnosis of AML, although most differences on QoL subscales relative to the general population were small and very likely not clinically relevant. No statistical difference between AML-LTS and normal adults was found for health-related life satisfaction (hLS). Notably, a subgroup of participants (26%) reported poor physical well-being (PWB), indicated by a FACT PWB subscore more than one standard deviation (SD) below the age- and sex-matched general population value (Figure A). This resulted in poor overall QoL (i.e. >1 SD below normal) for 13% of the participants (Figure B). To identify factors potentially associated with poor overall QoL, we constructed a logistic regression model including pre-specified cofactors (age, sex, time since initial diagnosis, relapse and alloSCT) and additional covariables that associated with QoL in univariate analyses (Table C). We found that participants with younger age, male sex, lower educational level, shorter time since diagnosis and a altered financial situation reported significantly lower QoL. No influence was found for other characteristics including treatment (alloSCT vs. no alloSCT), previous relapse, or de novo vs. secondary or therapy-related AML. Discussion Unlike previous studies of AML survivorship, our large cohort included a diverse spectrum of patients regarding age, time since diagnosis, and treatment modalities, which allows for new insight into long-term quality of life. Our study establishes that overall QoL in AML long-term survivors is comparable to the general population. Improvement of QoL continues beyond five years post diagnosis. Importantly, disease- and treatment-related factors, such as prior relapse or status post allogeneic transplantation, are not associated with overall QoL. However, we were able to identify risk factors for worse QoL (younger age, male sex, alteration of the financial situation), delineating a subgroup of patients that may still have a need for targeted psycho-social interventions five or more years after an AML diagnosis. Figure 1 Figure 1. Disclosures Berdel: Philogen S.p.A.: Consultancy, Current equity holder in publicly-traded company, Honoraria, Membership on an entity's Board of Directors or advisory committees. Hiddemann: Janssen: Research Funding; Roche: Membership on an entity's Board of Directors or advisory committees, Research Funding. Metzeler: AbbVie: Honoraria; Astellas: Honoraria; Daiichi Sankyo: Honoraria; Novartis: Consultancy; Jazz Pharmaceuticals: Consultancy; Pfizer: Consultancy; Celgene/BMS: Consultancy, Honoraria, Research Funding.

scholarly journals Long‐term follow‐up, quality of life, and survival of patients with Lambert‐Eaton myasthenic syndrome

Neurology ◽  
2019 ◽  
Vol 94 (5) ◽  
pp. e511-e520 ◽  
Author(s):  
Alexander F. Lipka ◽  
Marion I. Boldingh ◽  
Erik W. van Zwet ◽  
Marco W.J. Schreurs ◽  
Jan B.M. Kuks ◽  
...  
Keyword(s):  
Quality Of Life ◽  
General Population ◽  
Functional Impairments ◽  
Tumor Survival ◽  
Related Quality ◽  
Health Related ◽  
Myasthenic Syndrome

ObjectiveTo study survival and to characterize long-term functional impairments and health-related quality of life (HRQOL) of patients with Lambert-Eaton myasthenic syndrome (LEMS).MethodsIn this observational study, survival of patients with LEMS, separately for nontumor (NT) and small cell lung cancer (SCLC), was compared to that of the Dutch general population and patients with SCLC. Disease course in patients with LEMS was recorded retrospectively. Several scales for functional impairments and health-related quality of life were assessed.ResultsWe included 150 patients with LEMS. Survival was similar to that of the general population in 65 patients with NT-LEMS. Tumor survival was significantly longer in 81 patients with SCLC-LEMS compared to patients with non-LEMS SCLC (overall median survival 17 vs 7.0 months, p < 0.0001). At diagnosis, 39 (62%) of 63 patients with complete follow-up data were independent for activities of daily living, improving to 85% at the 1-year follow-up. The physical HRQOL composite score (55.9) was significantly lower than in the general population (76.3, p < 0.0001) and comparable to that of patients with myasthenia gravis (60.5). The mental HRQOL composite score was 71.8 in patients with LEMS, comparable to that of the general population (77.9, p = 0.19) and patients with myasthenia gravis (70.3).ConclusionsThis study shows that patients with NT-LEMS have normal survival. Patients with SCLC-LEMS have an improved tumor survival, even after correction for tumor stage. A majority of patients with LEMS report a stable disease course and remain or become independent for self-care after treatment.

Quality of Life Following Completion of Treatment for Adult Acute Lymphoblastic Leukemia with a Pediatric-Based Protocol.

Blood ◽  
2012 ◽  
Vol 120 (21) ◽  
pp. 2567-2567
Author(s):  
Elena Liew ◽  
Eshetu G Atenafu ◽  
Shabbir M.H. Alibhai ◽  
Joseph M. Brandwein
Keyword(s):  
Quality Of Life ◽  
Acute Lymphoblastic Leukemia ◽  
Peripheral Neuropathy ◽  
General Population ◽  
Lymphoblastic Leukemia ◽  
Adult Acute Lymphoblastic Leukemia ◽  
Eortc Qlq C30 ◽  
Eortc Qlq

Abstract Abstract 2567 Background: The use of pediatric-based protocols in the management of adult acute lymphoblastic leukemia (ALL) appears to result in improved survival, particularly in young adults. However, significant treatment-related toxicities have been identified with these regimens, including osteonecrosis and peripheral neuropathy. These are potentially disabling and can adversely affect quality of life (QoL); however, the long-term impact of such treatment regimens on health-related QoL in this adult population has not previously been reported. We therefore aimed to assess various dimensions of QoL in long-term survivors of adult ALL following treatment with a modified Dana Farber Cancer Institute 91-01 pediatric protocol, which is used as standard frontline therapy in our institution. Methods: QoL was self-reported using 5 psychometrically validated instruments: the EORTC QLQ-C30, the Functional Assessment of Cancer Therapy fatigue subscale (FACT-F), the Brief Pain Inventory, the Subjective Peripheral Neuropathy Screen (SPSS), and the 9-item Patient-Health Questionnaire (PHQ-9). Standard analyses of each instrument were conducted. Where available, results were compared to published population normative data. Results: 29 patients (median age 41 years, range 21–64, 90% male), in continuous complete remission at a median of 28 months following completion of the two-year treatment protocol, were enrolled between March 2010 - April 2012. In comparison to reference data from a general population, the mean global health score on the EORTC QLQ-C30 was similar (p=0.68), but leukemia survivors had lower cognitive (p<0.001) and social (p<0.001) function scores, as well as more marked financial difficulty (p<0.001). The most prevalent and severe of the symptom items assessed by the EORTC QLQ-C30 were fatigue and pain, both of which showed significant inverse correlation with global health status and all functional scales (physical, role, emotional, cognitive, and social). Some degree of fatigue was reported by 83% of patients. Evaluation by FACT-F revealed worse fatigue scores for leukemia survivors compared with the general population (p=0.03). Mean pain intensity was higher in those more than 24 months from completion of treatment, vs. < 24 months (p=0.04). In the 9 patients (31%) experiencing moderate-severe pain, the most common sites were joints and neck/back. Of the 10 patients reporting regular use of analgesics, 4 were using opioids. The SPSS identified 12 patients (43%) with moderate or severe symptoms associated with peripheral neuropathy (burning, paraesthesias and/or numbness), mostly affecting the lower extremities. Neuropathy was more severe in patients over age 40 (p<0.01). The PHQ-9 identified 4 patients (14%) with significant depressive symptoms. Conclusions: Long-term adult ALL survivors who were treated with a pediatric-based regimen generally do well in terms of global QoL. However, fatigue, joint-related pain and neuropathy symptoms are common and can negatively affect QoL. Impairments in the domains of cognitive function and social function, as well as the prominence of financial hardship in this population, are findings that warrant further exploration. Disclosures: No relevant conflicts of interest to declare.

Symbiotic linkage of sustainability, development and differentiation

2014 ◽  
Vol 24 (2) ◽  
pp. 95-106 ◽  
Author(s):  
Salil K. Sen
Keyword(s):  
Quality Of Life ◽  
Sustainable Development ◽  
Goodness Of Fit ◽  
Environmentally Benign ◽  
Logit Analysis ◽  
Indicator Variable ◽  
Content Type ◽  
Development And Differentiation

Purpose – There is a global convergence on issues pertaining to sustainability, such as water sharing, energy security and waste management. Symbiosis focus the need to secure an enduring relationship satisfying the quality of life need for novelty aspirations of the customers and stakeholders. This is addressed as sustainable differentiation. This study aims: to understand the need to develop the symbiosis of sustainable development and sustainable differentiation, to analyze the research framework of sustainability symbiosis though the underlying attributes of: need to develop, need to innovate and need to differentiate. Design/methodology/approach – The research design conceptualizes sustainable development as a process or evolution where firms may be symbiotically configured on the attributes of sustainability, development and differentiation. The logit analysis methodology addresses competitiveness coupled with environmentally benign technology to sustain the customers' preference for products and services that satisfy their quality of life needs. The approach is to estimate the symbiotic index of a local, regional or globally scalable habitat. The competitiveness coupled with environmentally benign technology can be sustained when the customers' preference for products and services satisfies their quality of life needs. Findings – The output indicates the significance (0.037 at 95 percent confidence level) of the constant term representing “quality of life need for novelty” justifying symbiotic linkage of sustainability, development and differentiation. There is goodness of fit (α 0.5617, Wald statistic 0.093) to establish the significance of the three variables of GDP (representing intensity of eco-efficient technology), population (standing for intensity of competitiveness) and sustaining empathy (in response to climate change). Their statistical significance indicates the propensity to differentiation given sustainable development would substantively improve the overall construct. Research limitations/implications – There is need for further research with primary data. The assumption that sustainable differentiation may become an indicator variable that may assume binary form needs thorough justification. The key implication is that differentiation creates grassroots distinctiveness to development that transforms sustainability into opportunity. This cost to benefit gap is bridged through the symbiotic chain of sustainability, development and differentiation. Originality/value – This sustainable differentiation metric harnesses a dormant, yet fundamental key to the success of sustainable development, the emotive linkage. This explanatory variable adds robustness to sustainable development models by way of etching a long-term memory trace for the sustainability practices of the organization as well as innovation efforts to differentiate long term providing an essence of competitiveness.

scholarly journals The effects of placement on dementia care recipients’ and family caregivers’ quality of life: a literature review

2017 ◽  
Vol 18 (1) ◽  
pp. 44-57 ◽  
Author(s):  
Heehyul Moon ◽  
Peggye Dilworth-Anderson ◽  
Johannes Gräske
Keyword(s):  
Quality Of Life ◽  
Long Term Care ◽  
Research Literature ◽  
Term Care ◽  
Content Type ◽  
Care Recipients ◽  
People With Dementia ◽  
Care Facilities

Purpose The purpose of this paper is to review and synthesize the research literature on the quality of life (QoL) of both caregivers (CGs) and care recipients (CRs) with dementia after admission to long-term care facilities. Design/methodology/approach Four databases – AgeLine, Medline, EBSCO, and PyscINFO – were searched and the relevant literature from 2002 onwards was reviewed. Findings The review of 12 studies (five studies, including only family CGs; six studies including residents; one study including both family CGs and CRs) reveals a discrepancy regarding the effects of institutionalization on the CRs’ and CGs’ QoL. Among seven studies on CRs’ QoL change, some reviewed studies found a significant decline in CRs’ QoL after placement with others showing that CRs’ QoL was improved or stable. While some reports indicated that some family CGs benefited from placement, others showed that CGs merely maintained their QoL. However, family CGs in the reviewed studies were more likely to report improved QoL than were their CRs after institutionalization. Research limitations/implications The authors recommend that future studies should focus on understanding the individual’s adaptation to placement, dyadic changes in QoL (including mediators/moderators). They emphasize the need for a comprehensive longitudinal study with more than one wave and includes diverse groups including racial/ethnic minority CGs and CRs. Originality/value This study reviewed and synthesized the research literature on the QoL of both caregiver and the people with dementia they cared for after those they cared for were admitted to long-term care facilities. The conclusions drawn about influences on QoL provide guidance for identifying best practices and research.

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