Clinically Significant Fatigue in Adult Leukemia Patients: Prevalence, Predictors, and Impact on Quality of Life

Abstract Purpose The Dementia-Related Quality of Life (DEMQOL) measure and the DEMQOL-Utility Score (DEMQOL-U) are validated tools for measuring quality of life (QOL) in people with dementia. What score changes translate to a clinically significant impact on patients’ lives was unknown. This study establishes the minimal important differences (MID) for these two instruments. Methods Anchor-based and distribution-based methods were used to estimate the MID scores from patients enrolled in a randomised controlled trial. For the anchor-based method, the global QOL (Q29) item from the DEMQOL was chosen as the anchor for DEMQOL and both Q29 and EQ-5D for DEMQOL-U. A one category difference in Q29, and a 0.07 point difference in EQ-5D score, were used to classify improvement and deterioration, and the MID scores were calculated for each category. These results were compared with scores obtained by the distribution-based methods. Results A total of 490 people with dementia had baseline DEMQOL data, of these 386 had 8-month data, and 344 had 12-month DEMQOL data. The absolute change in DEMQOL for a combined 1-point increase or decrease in the Q29 anchor was 5.2 at 8 months and 6.0 at 12 months. For the DEMQOL-U, the average absolute change at 8 and 12 months was 0.032 and 0.046 for the Q29 anchor and 0.020 and 0.024 for EQ-5D anchor. Conclusion We present MID scores for the DEMQOL and DEMQOL-U instruments obtained from a large cohort of patients with dementia. An anchored-based estimate of the MID for the DEMQOL is around 5 to 6 points; and 0.02 to 0.05 points for the DEMQOL-U. The results of this study can guide clinicians and researchers in the interpretation of these instruments comparisons between groups or within groups of people with dementia. Trial Registration Number and date of registration: ISRCTN17993825 on 11th October 2016.

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QOLP-04. PILOT STUDY OF A VIDEOCONFERENCE-BASED PSYCHOLOGICAL INTERVENTION FOR FAMILY CAREGIVERS OF PATIENTS WITH MALIGNANT GLIOMAS

Neuro-Oncology ◽

10.1093/neuonc/noaa215.729 ◽

2020 ◽

Vol 22 (Supplement_2) ◽

pp. ii175-ii175

Author(s):

Deborah Forst ◽

Michelle Mesa ◽

Emilia Kaslow-Zieve ◽

Areej El-Jawahri ◽

Joseph Greer ◽

...

Keyword(s):

Quality Of Life ◽

Self Efficacy ◽

Coping Skills ◽

Malignant Gliomas ◽

Anxiety Symptoms ◽

Structured Interviews ◽

Post Intervention ◽

Clinically Significant ◽

And Coping

Abstract BACKGROUND Caregivers of patients with malignant gliomas experience substantial anxiety symptoms while caring for someone with progressive neurological decline. Yet, interventions to reduce psychological distress and improve quality of life (QoL) in this caregiver population are lacking. METHODS We conducted an open pilot study evaluating feasibility and acceptability of a cognitive behavioral therapy-based intervention for caregivers of patients with malignant gliomas with clinically significant anxiety (Generalized Anxiety Disorder [GAD-7] score ≥ 5). Caregivers participated in six videoconference sessions with a mental health provider. We defined the intervention as feasible if ≥ 70% of eligible caregivers enrolled and ≥ 70% of those enrolled completed ≥ 50% of sessions. We evaluated intervention acceptability in semi-structured interviews. Caregivers completed baseline and post-intervention surveys assessing anxiety and depression symptoms (Hospital Anxiety and Depression Scale), QoL (Caregiver Oncology Quality of Life Questionnaire), caregiving burden (Caregiver Reaction Assessment), self-efficacy (Lewis Cancer Self-Efficacy Scale), and perceived coping skills (Measure of Current Status-Part A). We explored post-intervention changes using paired t-tests. RESULTS We obtained consent from 70.0% (21/30) of caregivers approached, of which 66.7% (14/21) had clinically significant anxiety and thus were eligible to participate (mean age=55.7 years, 64.3% female). Among enrolled caregivers, 71.4% (10/14) completed ≥ 50% of sessions. In semi-structured interviews, all participants found the intervention helpful and valued the ability to participate remotely via videoconference. Among caregivers who completed at least one session, 80.0% (8/10) completed all assessments and were included in analyses. Post-intervention, caregivers reported reduced anxiety symptoms (P=.02) and improved QoL (P=.03) and coping skills (P=.001). We found no significant change in depression, caregiving burden, or self-efficacy. CONCLUSION Our videoconference-based intervention is feasible and acceptable to caregivers. Participants reported significant improvements in anxiety symptoms, quality of life, and coping skills post-intervention, supporting further investigation of the intervention in a randomized controlled trial.

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Clinical Holistic Medicine: A Pilot Study on HIV and Quality of Life and a Suggested Cure for HIV and AIDS

The Scientific World JOURNAL ◽

10.1100/tsw.2004.24 ◽

2004 ◽

Vol 4 ◽

pp. 264-272 ◽

Cited By ~ 6

Author(s):

Søren Ventegodt ◽

Trine Flensborg-Madsen ◽

Niels Jørgen Andersen ◽

Mohammed Morad ◽

Joav Merrick

Keyword(s):

Quality Of Life ◽

Hiv And Aids ◽

Cd4 Count ◽

Holistic Medicine ◽

Cross Sectional ◽

Ethical Attitude ◽

Validated Questionnaire ◽

Clinically Significant ◽

Higher Consciousness

This study was undertaken to examine the association between the immunological impact of HIV (measured by CD4 count) and global self-assessed quality of life (QOL) (measured with QOL1) for people suffering from HIV, to see if the connection was large and statistically strong enough to support our hypothesis of a strong QOL-immunological connection through the nonspecific, nonreceptor-mediated immune system, and thus to give a rationale for a holistic cure for HIV. This cross-sectional population study in Uganda included 20 HIV infected persons with no symptoms of AIDS and a CD4 count above 200 mill./liter. The main outcome measures were CD4 count, global QOL measured with the validated questionnaire QOL1, translated to Luganda and translated back to English. We found a large, clinically significant correlation between the number of T-helper cells (CD4) and global self-assessed quality of life (QOL1) (r = 0.57, p = 0.021), when controlled for age, gender, and years of infection. Together with other studies and holistic medicine theory, the results have given rationale for a holistic cure for HIV. We suggest, based on our findings and theoretical considerations, that HIV patients who improve their global QOL, also will improve their CD4 counts. Using the technique of holistic medicine based on the life mission theory and the holistic process theory of healing, we hypothesize that the improvement of QOL can have sufficient biological effect on the CD4, which could avoid or postpone the development of AIDS. A holistic HIV/AIDS cure improving the QOL draws on hidden resources in the person and is thus affordable for everybody. Improving global QOL also means a higher consciousness and a more ethical attitude, making it more difficult for the HIV-infected person to pass on the infection.

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178Depression but not physical activity mediates the fatigue-mental quality of life relationship in multiple sclerosis

International Journal of Epidemiology ◽

10.1093/ije/dyab168.606 ◽

2021 ◽

Vol 50 (Supplement_1) ◽

Author(s):

Alexander Fidao ◽

Alysha De Livera ◽

Tracey Weiland ◽

George Jelinek ◽

Sandra Neate ◽

...

Keyword(s):

Quality Of Life ◽

Physical Activity ◽

Multiple Sclerosis ◽

Indirect Effect ◽

Mediation Effect ◽

Study Cohort ◽

Wide Range ◽

Clinically Significant

Abstract Background Fatigue is among the most prevalent symptoms of multiple sclerosis (MS), and significantly detrimental to mental quality of life. We examined the role of depression and physical activity as mediators in the fatigue-QoL relationship in MS. Methods Using an international study cohort measuring a wide range of lifestyle and clinical factors, determinants of fatigue (Fatigue Severity Scale) and mental quality of life (MSQoL-54; QoL) were assessed in 2,104 participants using log-binomial and linear regression, respectively. Structural equation modelling (SEM) was used to assess the mediating role of depression and physical activity between fatigue and mental QoL. Results The median mental QoL score in the sample was 73.8/100. The mean fatigue score was 40.5/63, with 65.6% having clinically significant fatigue. In SEM analyses evaluating depression as a mediator of the fatigue-QoL relationship, mental QoL was 14.17-points lower in those with clinically significant fatigue, of which the indirect effect via depression accounted for over 30.8% (p < 0.001). This mediation effect was most pronounced for the Role Limitations from Emotional Issues (44.9%, p < 0.001) and Emotional Wellbeing (41.6%, p < 0.001) subdomains. Evaluating physical activity as a mediator of the fatigue-QoL relationship, mental QoL was 11.03-points lower in those with clinically significant fatigue, of which the indirect effect via physical activity accounted for only 1.0% (p = 0.001). Conclusions This study provides evidence that depression accounts for a majority of the fatigue-mental QoL relationship, while physical activity only plays a small role. While replication and longitudinal studies are required for validation, our findings may inform the development of treatments for reducing the impacts of fatigue and improving QoL in people with MS. Key messages Fatigue’s negative impact on emotional quality of life in multiple sclerosis is not a function of reduced ambulation but instead its impact on depression. Reducing depression may thus markedly improve quality of life in this population.

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Quality of Life in OCD: Differential Impact of Obsessions, Compulsions, and Depression Comorbidity

The Canadian Journal of Psychiatry ◽

10.1177/070674370304800202 ◽

2003 ◽

Vol 48 (2) ◽

pp. 72-77 ◽

Cited By ~ 77

Author(s):

Mario Masellis ◽

Neil A Rector ◽

Margaret A Richter

Keyword(s):

Quality Of Life ◽

Depression Symptoms ◽

Depression Severity ◽

Differential Impact ◽

Obsessive Compulsive ◽

Cross Sectional ◽

Compulsive Disorder ◽

Clinically Significant ◽

Cross Sectional Design

Objective: An anxiety disorder severely affects the sufferer's quality of life (QOL), and this may be particularly true of those with obsessive–compulsive disorder (OCD). This study examines the differential impact of obsessions, compulsions, and depression comorbidity on the QOL of individuals with OCD. Method: Forty-three individuals diagnosed with OCD according to DSM-IV criteria and experiencing clinically significant obsessions and compulsions completed measures of QOL, obsessive–compulsive symptom severity, and depression severity. Results: Obsession severity was found to significantly predict patient QOL, whereas the severity of compulsive rituals did not impact on QOL ratings. Comorbid depression severity was the single greatest predictor of poor QOL, accounting for 54% of the variance. Conclusions: Given the importance of these symptoms, treatments that directly target obsessions and secondary depression symptoms in OCD are warranted. However, replication of these findings in a prospective cohort study is required, because although the the current study's cross-sectional design allows for the examination of the associations among obsessions, depression, and QOL, it cannot establish their temporal framework (that is, causal relations).

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Systematic Pain Assessment and Management

Palliative Care in Nephrology ◽

10.1093/med/9780190945527.003.0015 ◽

2020 ◽

pp. 148-166

Author(s):

Sara N. Davison

Keyword(s):

Quality Of Life ◽

Chronic Kidney Disease ◽

Chronic Pain ◽

Pain Assessment ◽

Prescribing Patterns ◽

Symptom Screening ◽

Chronic Disorder ◽

Psychosocial Consequences ◽

Clinically Significant

Patients with chronic kidney disease suffer from high rates of pain. Pain is a highly complex, multidimensional, and personal phenomenon with far reaching physical and psychosocial consequences if the pain progresses to become a chronic disorder. Systematic integration of global symptom screening needs to be incorporated into routine kidney care, followed by a comprehensive pain assessment for those with clinically significant pain, keeping in mind the overall goal is to promote functionality and quality of life and not to necessarily completely resolve the pain. There is tremendous variability within and between countries in the management of pain, including the prescribing patterns of analgesics. This chapter outlines a systematic approach to the assessment and management of acute and chronic pain with both nonpharmacologic and pharmacologic interventions.

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Effect of a brief physical activity-based presentation by a former patient for men treated with radical prostatectomy for prostate cancer: a mixed methods pilot study

Supportive Care in Cancer ◽

10.1007/s00520-020-05455-4 ◽

2020 ◽

Vol 29 (1) ◽

pp. 145-154

Author(s):

Louis Fox ◽

Theresa Wiseman ◽

Declan Cahill ◽

Louisa Fleure ◽

Janette Kinsella ◽

...

Keyword(s):

Quality Of Life ◽

Physical Activity ◽

Prostate Cancer ◽

Mixed Methods ◽

Pragmatic Trial ◽

Behavioural Intervention ◽

Structured Interviews ◽

Exercise Specialist ◽

Clinically Significant

Abstract Purpose Existing research indicates that physical activity (PA) is beneficial to men with prostate cancer (PCa). We examined the potential of a single-contact peer-support-based behavioural intervention to promote PA engagement in men treated for PCa. Methods A mixed methods design was employed, comprising a two-arm pragmatic trial and semi-structured interviews. The intervention was a 10-min PA-based presentation by a former patient, delivered in group seminars that are provided for patients as standard care. Seminars were alternately allocated to (a) cancer exercise specialist talk + patient speaker talk or (b) cancer exercise specialist talk only. Self-reported PA, exercise motivation, quality of life, fatigue and clinical and demographic characteristics were obtained from n = 148 (intervention: n = 69; control: n = 79) patients immediately prior to the seminar, and at follow-up ≈ 100 days later. Data were analysed using ANCOVA models and χ2 tests. Fourteen semi-structured interviews with intervention participants, which explored how the intervention was experienced, were analysed using a grounded theory-style approach. Results The intervention had no significant effect on quantitatively self-reported PA (p = 0.4). However, the intervention was statistically and clinically beneficial for fatigue (p = 0.04) and quality of life (p = 0.01). Qualitative analysis showed that the intervention was beneficial to psychological wellbeing and some participants had increased intention to engage in PA as a result of the intervention. Conclusions A brief one-off PA-based presentation for men with PCa, delivered by a former patient alongside cancer exercise specialist advice, may result in clinically significant benefits to quality of life and may influence PA intention in certain individuals.

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Quality of life of children with tuberous sclerosis complex

Archives of Disease in Childhood ◽

10.1136/archdischild-2018-316394 ◽

2019 ◽

Vol 104 (10) ◽

pp. 972-978 ◽

Cited By ~ 2

Author(s):

Choong Yi Fong ◽

Kexin Ng ◽

Ann Nie Kong ◽

Lai Choo Ong ◽

Mohamed Ahmad Rithauddin ◽

...

Keyword(s):

Quality Of Life ◽

Parenting Stress ◽

Psychosocial Health ◽

Summary Score ◽

Healthy Children ◽

Proxy Report ◽

Chinese Ethnicity ◽

Scale Scores ◽

Clinically Significant

AimEvaluation of impaired quality of life (QOL) of Malaysian children with tuberous sclerosis complex (TSC) and its possible risk factors.MethodCross-sectional study on 68 parents of Malaysian children aged 2–18 years with TSC. QOL was assessed using proxy-report Paediatric Quality of Life Inventory (PedsQL) V.4.0, and scores compared with those from a previous cohort of healthy children. Parents also completed questionnaires on child behaviour (child behaviour checklist (CBCL)) and parenting stress (parenting stress index-short form). Multiple regression analysis was used to determine sociodemographic, medical, parenting stress and behavioural factors that impacted on QOL.ResultsThe mean proxy-report PedsQL V.4.0 total scale score, physical health summary score and psychosocial health summary score of the patients were 60.6 (SD 20.11), 65.9 (SD 28.05) and 57.8 (SD 19.48), respectively. Compared with healthy children, TSC patients had significantly lower mean PedsQL V.4.0 total scale, physical health and psychosocial health summary scores (mean difference (95% CI): 24 (18–29), 20 (12–27) and 26 (21–31) respectively). Lower total scale scores were associated with clinically significant CBCL internalising behaviour scores, age 8–18 years and Chinese ethnicity. Lower psychosocial health summary scale scores were associated with clinically significant CBCL internalising behaviour scores, Chinese ethnicity or >1 antiepileptic drug (AED).ConclusionParents of children with TSC reported lower PedsQL V.4.0 QOL scores in all domains, with psychosocial health most affected. Older children, those with internalising behaviour problems, of Chinese ethnicity or on >1 AED was at higher risk of lower QOL. Clinicians need to be vigilant of QOL needs among children with TSC particularly with these additional risk factors.

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Can Meditation Influence Quality of Life, Depression, and Disease Outcome in Multiple Sclerosis? Findings from a Large International Web-Based Study

Behavioural Neurology ◽

10.1155/2014/916519 ◽

2014 ◽

Vol 2014 ◽

pp. 1-9 ◽

Cited By ~ 11

Author(s):

Adam B. Levin ◽

Emily J. Hadgkiss ◽

Tracey J. Weiland ◽

Claudia H. Marck ◽

Dania M. van der Meer ◽

...

Keyword(s):

Quality Of Life ◽

Multiple Sclerosis ◽

Online Survey ◽

Web Based ◽

Related Quality ◽

Health Related ◽

Clinically Significant ◽

Disability Level ◽

Relapse Rates

Objectives. To explore the association between meditation and health related quality of life (HRQOL), depression, fatigue, disability level, relapse rates, and disease activity in a large international sample of people with multiple sclerosis (MS).Methods. Participants were invited to take part in an online survey and answer questions relating to HRQOL, depression, fatigue, disability, relapse rates, and their involvement in meditation practices.Results. Statistically and potentially clinically significant differences between those who meditated once a week or more and participants who never meditated were present for mean mental health composite (MHC) scores, cognitive function scale, and health perception scale. The MHC results remained statistically significant on multivariate regression modelling when covariates were accounted for. Physical health composite (PHC) scores were higher in those that meditated; however, the differences were probably not clinically significant. Among those who meditated, fewer screened positive for depression, but there was no relationship with fatigue or relapse rate. Those with worsened disability levels were more likely to meditate.Discussion. The study reveals a significant association between meditation, lower risk of depression, and improved HRQOL in people with MS.

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