41 results
Search Results
2. Motor function daily living skills 5 years after paediatric arterial ischaemic stroke: a prospective longitudinal study.
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Cooper, Anna N, Anderson, Vicki, Greenham, Mardee, Hearps, Stephen, Hunt, Rod W, Mackay, Mark T, Ditchfield, Michael, Coleman, Lee, Monagle, Paul, and Gordon, Anne L
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STROKE patients ,PEDIATRIC diagnosis ,MOTOR ability in children ,QUALITY of life ,ACTIVITIES of daily living ,FATIGUE (Physiology) ,NEONATAL diseases ,HEALTH outcome assessment ,MENTAL health ,PHYSIOLOGICAL adaptation ,CEREBRAL ischemia ,DEVELOPMENTAL disabilities ,LONGITUDINAL method ,MOVEMENT disorders ,NEUROLOGIC examination ,CROSS-sectional method ,STROKE ,DISEASE complications ,PSYCHOLOGY - Abstract
Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
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- 2019
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3. Health-related quality of life and peer relationships in adolescents with developmental coordination disorder and attention-deficit-hyperactivity disorder.
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Dewey, Deborah and Volkovinskaia, Anna
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MOVEMENT disorders ,QUALITY of life ,HUMAN behavior ,SELF-perception ,SCHOOL environment ,LEISURE & psychology ,MENTAL health ,ATTENTION-deficit hyperactivity disorder ,COMPARATIVE studies ,DEVELOPMENTAL disabilities ,FRIENDSHIP ,LONGITUDINAL method ,RESEARCH methodology ,MEDICAL cooperation ,PSYCHOMOTOR disorders ,QUESTIONNAIRES ,RESEARCH ,RESEARCH funding ,EVALUATION research ,DISEASE complications ,PSYCHOLOGICAL factors ,PSYCHOLOGY - Abstract
Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
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- 2018
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4. Economic evaluation and cost of interventions for cerebral palsy: a systematic review.
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Shih, Sophy T. F., Tonmukayakul, Utsana, Imms, Christine, Reddihough, Dinah, Graham, H. Kerr, Cox, Liz, and Carter, Rob
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CEREBRAL palsy ,MEDICAL care costs ,META-analysis ,RANDOMIZED controlled trials ,BOTULINUM toxin ,CEREBRAL palsy treatment ,QUALITY of life ,MENTAL health ,ALGORITHMS ,COST effectiveness ,HEALTH outcome assessment ,SYSTEMATIC reviews ,DISEASE management ,PSYCHOLOGY - Abstract
Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
- Published
- 2018
- Full Text
- View/download PDF
5. Development and validation of the Pediatric Stroke Quality of Life Measure.
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Fiume, Andrea, Deveber, Gabrielle, Jang, Shu‐Hyun, Fuller, Colleen, Viner, Shani, Friefeld, Sharon, and Jang, Shu-Hyun
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STROKE ,QUALITY of life ,INTRACLASS correlation ,TEST reliability ,CEREBRAL embolism & thrombosis ,MENTAL health ,AGE distribution ,PEDIATRICS ,PSYCHOMETRICS ,QUESTIONNAIRES ,RESEARCH evaluation ,SOCIAL classes ,PSYCHOLOGY - Abstract
Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
- Published
- 2018
- Full Text
- View/download PDF
6. Parent-reported health-related quality of life of children with Down syndrome: a descriptive study.
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Shields, Nora, Leonard, Helen, Munteanu, Shannon, Bourke, Jennifer, Lim, Polly, Taylor, Nicholas F., and Downs, Jenny
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PEOPLE with Down syndrome ,PSYCHOLOGICAL well-being ,DOWN syndrome ,MENTAL health ,PATHOLOGICAL psychology ,AGE distribution ,ANTHROPOMETRY ,COMPARATIVE studies ,HEALTH status indicators ,RESEARCH methodology ,MEDICAL cooperation ,PSYCHOLOGY of parents ,QUALITY of life ,QUESTIONNAIRES ,RESEARCH ,EVALUATION research ,CROSS-sectional method ,PSYCHOLOGY - Abstract
Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
- Published
- 2018
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7. Long-term outcomes after selective dorsal rhizotomy: a retrospective matched cohort study.
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Munger, Meghan E, Aldahondo, Nanette, Krach, Linda E, Novacheck, Tom F, and Schwartz, Michael H
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RHIZOTOMY ,SPINAL nerve root surgery ,CEREBRAL palsy ,QUALITY of life ,ORTHOPEDIC surgery ,MENTAL health ,GAIT in humans ,RANGE of motion of joints ,LONGITUDINAL method ,TREATMENT effectiveness ,CASE-control method ,PSYCHOLOGY - Abstract
Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
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- 2017
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- View/download PDF
8. The relationship between quality of life and health-related quality of life in young males with Duchenne muscular dystrophy.
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Wei, Yi, Speechley, Kathy Nixon, Zou, Guangyong, and Campbell, Craig
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QUALITY of life ,DUCHENNE muscular dystrophy ,MEDICAL terminology ,YOUNG men ,PATIENTS ,DISEASES ,HEALTH ,MENTAL health ,HEALTH status indicators ,PSYCHOLOGY of parents ,PSYCHOMETRICS ,QUESTIONNAIRES ,CROSS-sectional method ,PSYCHOLOGY - Abstract
Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
- Published
- 2017
- Full Text
- View/download PDF
9. The impact of COVID‐19 on the psychosocial well‐being of older adults: A literature review.
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Seckman, Charlotte
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COGNITION disorder risk factors ,DEMENTIA risk factors ,WELL-being ,CINAHL database ,COVID-19 ,AFFECT (Psychology) ,SYSTEMATIC reviews ,AGE distribution ,PSYCHOLOGY ,HEALTH status indicators ,MEDICAL technology ,SATISFACTION ,CONCEPTUAL structures ,SOCIOECONOMIC factors ,THEORY ,QUALITY of life ,PSYCHOLOGICAL adaptation ,MEDLINE ,EMOTIONS ,ANXIETY ,SOCIAL integration ,PSYCHOLOGICAL stress - Abstract
Introduction: The novel coronavirus SARS‐CoV2 (COVID‐19) was declared a global pandemic in 2020 with the greatest risk to older adults. Prolonged restrictions and isolation threaten the social and emotional welfare of vulnerable groups with concerns focused on the long‐term impact of this pandemic on the health and well‐being of aging populations. Purpose: Using the Socioemotional Selectivity Theory (STT) as a conceptual framework, the purpose of this literature review was to explore the impact of COVID‐19 on the psychological and social well‐being of older adults. Methods: Numerous academic and healthcare‐related databases were searched to yield 24 relevant primary research articles, published during the pandemic (2020–2022), for analysis. Results/Conclusions: Overall results indicated the pandemic had a significant negative affect on the psychological and social well‐being of older adults to include those with cognitive impairments and dementia despite perceptions of reduced awareness. There were significant differences between age groups with older adults reporting greater emotional stability and coping skills than younger cohorts. Although supportive services and the use of technology‐enhanced well‐being these resources were reduced during the pandemic due to lack of trained staff, funding, and other socioeconomic or political barriers. The SST proposes that feelings of satisfaction, a sense of belonging, and purpose are important for emotional well‐being but the pandemic challenged these goals and, for many, resulted in stress, anxiety, and depression. Clinical Relevance: Healthcare providers and policymakers need to be aware of the negative consequences triggered by the prolonged pandemic and take measures to provide services that support the psychosocial well‐being of older adults. [ABSTRACT FROM AUTHOR]
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- 2023
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10. Barrett's oesophagus: A qualitative study of patient burden, care delivery experience and follow‐up needs.
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Britton, James, Hamdy, Shaheen, McLaughlin, John, Horne, Maria, and Ang, Yeng
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QUALITY of life ,MENTAL health ,PATIENT aftercare ,ANXIETY ,COMMUNICATION ,CONCEPTUAL structures ,INTERVIEWING ,RESEARCH methodology ,MEDICAL care ,MEDICAL referrals ,PRIMARY health care ,RESEARCH ,RESEARCH funding ,QUALITATIVE research ,JUDGMENT sampling ,DATA analysis ,QUANTITATIVE research ,THEMATIC analysis ,BARRETT'S esophagus ,HEALTH literacy ,DATA analysis software ,PATIENTS' attitudes ,ENDOSCOPIC gastrointestinal surgery ,PSYCHOLOGY - Abstract
Background: Barrett's oesophagus (BO), a precursor to oesophageal adenocarcinoma, requires long‐term endoscopic surveillance. The rising incidence of this chronic disease has implications for service provision and patient burden. Few studies have explored BO patients' personal burden, care delivery experience and participation in health‐care delivery decisions. Objective: To identify and explore factors impacting BO patients' health‐related quality of life, follow‐up needs and views on new models of follow‐up care. Design: An exploratory qualitative approach was adopted using semi‐structured, in‐depth, one‐to‐one interviews, audio‐recorded and transcribed verbatim. Patients undergoing BO surveillance, at a single NHS hospital, were recruited using purposive sampling with the aim of achieving maximum variation. Data were analysed using framework analysis approach, supported by NVivo Pro 11. Results: Data saturation occurred after 20 participant interviews. Ten subthemes and three main themes emerged from the analysis: (a) burden of disease—symptom control, worry of oesophageal cancer and surveillance endoscopy; (b) follow‐up experiences—follow‐up care, at this NHS hospital, was found to be inconsistent and often inadequate to meet patients' needs, in particular a lack of disease‐specific information; and (c) follow‐up needs—participants sought enhanced communication, organization and structure of care. They highly valued face‐to‐face interaction with a specialist, and the concept of direct secondary care access in‐between endoscopies was reassuring to participants. Conclusions: This qualitative research provides an in‐depth account of the patients' perspective of BO, the effectiveness of follow‐up care and patient opinion on new follow‐up systems. [ABSTRACT FROM AUTHOR]
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- 2019
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11. Impact of venous leg ulceration on health‐related quality of life: A synthesis of data from randomized controlled trials compared to population norms.
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Jull, Andrew, Muchoney, Sara, Parag, Varsha, Wadham, Angela, Bullen, Chris, and Waters, Jill
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AGE distribution ,EMOTIONS ,ETHNIC groups ,HEALTH status indicators ,HEALTH surveys ,LEG ulcers ,LIFE skills ,MENTAL health ,QUALITY of life ,QUESTIONNAIRES ,REGRESSION analysis ,SEX distribution ,SOCIAL skills ,SURVEYS ,VENOUS insufficiency ,RANDOMIZED controlled trials ,SPIRITUAL care (Medical care) ,PHYSICAL activity ,DISEASE complications ,PSYCHOLOGY - Abstract
Venous insufficiency is the most common cause of leg ulceration, but the impact of venous leg ulceration on health‐related quality of life has not been adequately assessed. This study compared data from randomized controlled trials to population norms obtained from a large national population survey. We combined the baseline Short Form‐36 (SF‐36) version 1 data from two New Zealand randomized controlled trials that recruited participants with VLU and compared the pooled data to the population scores obtained from the New Zealand Health Survey using general linear regression to adjust for age, sex, and ethnicity differences between the cohorts. Baseline SF‐36 scores obtained from 618 trial participants were compared to the SF‐36 scores obtained from the 12,529 participants in the New Zealand Health Survey. Participants with VLU had significantly lower crude SF‐36 scores across all eight SF‐36 domains, but there was interaction between age and group. Adjusted mean differences for participants aged 65 years or younger were −25.8, −32.1, −21.2, −9.6, −7.6, −23.9, −21.5, and −9.3, respectively, for Physical Functioning, Role Physical, Bodily Pain, General Health, Vitality, Social Functioning, Role Emotional, and Mental Health whereas the adjusted mean differences for older participants were −15.7, −23.8, −13.8, −0.3 (nonsignificant), −4.6, −15.3, −21.2, and −6.6. This study is the first to compare a VLU population to norms from a general population survey and the first to show VLU interacts with age creating stronger impact in younger patients compared their age cohort. Younger patients may have need of more pastoral care as a consequence. [ABSTRACT FROM AUTHOR]
- Published
- 2018
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12. Randomized controlled trial of a peer led multimodal intervention for men with prostate cancer to increase exercise participation.
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Galvão, Daniel A., Newton, Robert U., Girgis, Afaf, Lepore, Stephen J., Stiller, Anna, Mihalopoulos, Cathrine, Gardiner, Robert A., Taaffe, Dennis R., Occhipinti, Stefano, and Chambers, Suzanne K.
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EXERCISE ,QUALITY of life ,PROSTATE cancer patients ,PHYSICAL activity ,PSYCHOLOGICAL distress ,EXERCISE & psychology ,MENTAL health ,PROSTATE tumors ,PROSTATE tumors treatment ,COUNSELING ,PATIENT compliance ,STATISTICAL sampling ,HEALTH self-care ,TELEPHONES ,AFFINITY groups ,SOCIAL support ,RANDOMIZED controlled trials ,TREATMENT effectiveness ,PSYCHOLOGY - Abstract
Objective: Exercise may reduce morbidity, increase survival, and improve quality of life (QoL) in prostate cancer patients. However, effective ways to encourage exercise outside carefully controlled clinical trials remain uncertain. We evaluated the effectiveness of peer-led self-management for increasing exercise participation in men with localized prostate cancer.Methods: Four hundred and sixty-three prostate cancer patients from Queensland, Australia were randomized to a monthly telephone-based group peer support for 6 months supported by self-management materials and exercise equipment (INT, n = 232) or usual care (UC, n = 231). Participants were assessed at baseline, 3, 6, and 12 months. Primary outcomes were compliance with exercise guidelines; secondary outcomes were psychological distress and QoL.Results: Patients in INT engaged in more resistance exercise than UC at 3 months (19.4 [95% CI 6.52 to 32.28] min/wk, P = .003) and 6 months (14.6 [95% CI 1.69 to 27.58] min/wk, P = .027); more men achieved sufficient physical activity levels at 3 months (χ2 = 8.89, P = 0.003). There was no difference between groups for aerobic-based activity at any time point nor for resistance exercise time at 12-month follow-up. INT had higher QoL Relationships scores at 3 months (.03 [95% CI .00 to .06], P = .038) compared with UC. Limitation included self-reported assessment of exercise.Conclusions: Peer-led intervention was effective in increasing patients' resistance exercise participation in the short-to-medium term and in the number of men achieving sufficient activity levels in the short-term; however, this was not accompanied by overall improvements in QoL or psychological distress. Methods to increase effectiveness and maintain long-term adherence require further investigation. [ABSTRACT FROM AUTHOR]- Published
- 2018
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13. Understanding how coping strategies and quality of life maintain hope in patients deliberating phase I trial participation.
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van der Biessen, Diane A., van der Helm, Peer G., Klein, Dennis, van der Burg, Simone, Mathijssen, Ron H., Lolkema, Martijn P., and de Jonge, Maja J.
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CANCER patient psychology ,PSYCHOLOGICAL adaptation ,LOCUS of control ,QUALITY of life ,CANCER patients ,INFORMED consent (Medical law) ,MENTAL health ,TUMORS & psychology ,PATIENT participation ,ADAPTABILITY (Personality) ,CLINICAL trials ,HOPE ,MOTIVATION (Psychology) ,READABILITY (Literary style) ,CROSS-sectional method ,PSYCHOLOGY - Abstract
Objective: This study aimed to understand how hope and motivation of patients considering phase I trial participation are affected by psychological factors such as coping strategies and locus of control (LoC) and general well-being as measured by the quality of life (QoL).Methods: An exploratory cross-sectional study was performed in patients with incurable cancer (N = 135) referred to our phase I unit for the first time. Patients were potentially eligible for phase I trial participation and participated in our study while deliberating phase I trial participation. We used questionnaires on hope, motivation to participate, coping, LoC, and QoL. To investigate the nature and magnitude of the relationships between the scales, a structural equation modeling (SEM) was fitted to the data.Results: Hope significantly predicted the motivation to participate in phase I trials. Predictors of hope were a combination of flexible and tenacious goal pursuit (both P < .01), internal LoC (P < .01), and QoL (P < .01). The SEM showed an exact fit to the data, using a null hypothesis significance test: chi-square (8) = 9.30, P = .32.Conclusions: Patients considering phase I trial participation seem to use a pact of tenacious and flexible coping and control to stay hopeful. Furthermore, hope and QoL positively affected each other. The psychological pact may promote an adaptation enabling them to adjust to difficult circumstances by unconsciously ignoring information, called dissonance reduction. This mechanism may impair their ability to provide a valid informed consent. We suggest including a systematic exploration of patients' social context and values before proposing a phase I trial. [ABSTRACT FROM AUTHOR]- Published
- 2018
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14. Cognitive impairment in Parkinson's disease: impact on quality of life of carers.
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Lawson, RA, Yarnall, AJ, Johnston, F, Duncan, GW, Khoo, TK, Collerton, D, Taylor, JP, Burn, DJ, Lawson, R A, Yarnall, A J, Duncan, G W, Khoo, T K, Taylor, J P, Burn, D J, and ICICLE-PD study group
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MILD cognitive impairment ,COGNITION disorders ,CAREGIVERS ,PARKINSON'S disease ,QUALITY of life ,MENTAL health ,ACTIVITIES of daily living ,NEUROPSYCHOLOGICAL tests ,REGRESSION analysis ,RESEARCH funding ,PSYCHOLOGY - Abstract
Background: The quality of life (QoL) of informal caregivers of people with Parkinson's disease (PD) (PwP) can be affected by the caring role. Because of cognitive symptoms and diminished activities of daily living, in addition to the management of motor symptoms, carers of PwP and cognitive impairment may experience increased levels of burden and poorer QoL compared with carers of PwP without cognitive impairment. This study aimed to investigate the impact of cognitive impairment in PD upon QoL of carers.Methods: Approximately 36 months after diagnosis, 66 dyadic couples of PwP and carers completed assessments. PwP completed a schedule of neuropsychological assessments and QoL measures; carers of PwP completed demographic questionnaires and assessments of QoL. Factor scores of attention, memory/executive function and global cognition, as derived by principal component analysis, were used to evaluate cognitive domains.Results: Hierarchical regression analysis found lower Montreal Cognitive Assessment was a significant independent predictor of poorer carer QoL, in addition to number of hours spent caregiving, carer depression and PD motor severity. Attentional deficits accounted for the largest proportion of variance of carer QoL. Carers of PwP and dementia (n = 9) had significantly poorer QoL scores compared with PwP and mild cognitive impairment (n = 18) or normal cognition (n = 39) carers (p < 0.01).Conclusions: Attentional deficits were the strongest predictor of carer QoL compared with other cognitive predictors. Carers for those with PD dementia reported the poorest QoL. Interventions such as respite or cognitive behavioural therapy to improve mood and self-efficacy in carers may improve carer QoL. © 2016 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]- Published
- 2017
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15. The quality of life in genetic neuromuscular disease questionnaire: Rasch validation of the French version.
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Dany, Antoine, Rapin, Amandine, Lavrard, Brice, Saoût, Virginie, Réveillère, Christian, Bassez, Guillaume, Tiffreau, Vincent, Péréon, Yann, Sacconi, Sabrina, Eymard, Bruno, Dramé, Moustapha, Jolly, Damien, Novella, Jean‐Luc, Hardouin, Jean‐Benoit, and Boyer, François C.
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NEUROMUSCULAR disease diagnosis ,QUALITY of life ,MENTAL health ,ACTIVITIES of daily living ,COMPARATIVE studies ,RESEARCH methodology ,MEDICAL cooperation ,NEUROMUSCULAR diseases ,QUESTIONNAIRES ,RESEARCH ,EVALUATION research ,PSYCHOLOGY - Abstract
Introduction: Slowly progressive, genetic neuromuscular diseases (gNMDs) often lead to important motor deficiencies and functional limitations. The Quality of Life in Genetic Neuromuscular Disease Questionnaire (QoL-gNMD) is a new health-related quality-of-life questionnaire developed for these patients. The purpose of the present study was to validate the French version of the QoL-gNMD and to calibrate its measurement system.Methods: Both the QoL-gNMD and a validated generic questionnaire (WHOQOL-BREF) were administered to patients. Validation was performed using item response theory. The partial credit model (Rasch) was used to calibrate each domain.Results: Three hundred fifteen adult patients were included. All 3 domains showed adequate psychometric properties (internal consistency: person separation index >0.77; repeatability: test-retest intraclass correlation coefficient >0.75, scalability coefficient >0.38) and fitted the partial credit model. The QoL-gNMD also demonstrated adequate concurrent validity with the WHOQOL-BREF.Discussion: The QoL-gNMD showed adequate psychometric properties and can be used in clinical settings. Although not anchor-based, the minimum detectable change tables help in interpreting score change. Muscle Nerve 56: 1085-1091, 2017. [ABSTRACT FROM AUTHOR]- Published
- 2017
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16. Quality of life of immigrant and non-immigrant infertile patients in a publicly funded in vitro fertilisation program: a cross-sectional study.
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Hasson, J, Tulandi, T, Shavit, T, Shaulov, T, Seccareccia, E, and Takefman, J
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HUMAN in vitro fertilization ,QUALITY of life ,SOCIODEMOGRAPHIC factors ,HEALTH of immigrants ,PSYCHOSOCIAL factors ,SOCIOCULTURAL factors ,MENTAL health ,INFERTILITY treatment ,FERTILIZATION in vitro ,IMMIGRANTS ,PSYCHOLOGY of immigrants ,INFERTILITY ,PUBLIC buildings ,CROSS-sectional method ,PSYCHOLOGY - Abstract
Objective: To investigate whether there are differences in fertility quality of life (FertiQoL) and socio-demographic characteristics between immigrants and non-immigrant patients attending a government-funded fertility program.Design: Cross-sectional study.Setting: McGill University Reproductive Center in Montreal, Canada, at a time when governmental funding for in vitro fertilisation (IVF) was provided to all residents.Population: All infertile patients, males and females, attending the center between March and July 2015.Methods: Patients were invited to complete anonymous questionnaires which included socio-demographic items and the validated FertiQoL questionnaire.Main Outcome Measures: Socio-demographic characteristics (age, gender, marital state, infertility type & duration, previous IVF attempts; education, employment, income, ethnicity, spoken languages) and FertiQoL scores.Results: In all, 1020 patients completed the questionnaires; of these, 752 (77.7%) non-immigrant Canadian citizens and 215 (22.3%) resident immigrants were included in the analysis. Median duration in Canada for immigrants was 4 years. Immigrants were more likely to have university/graduate degrees (75% versus 64%), to be unemployed (37% versus 13.1%) and to have lower annual household incomes (72.8% versus 39.5%, all P < 0.05). They also reported poorer QoL and achieved significantly lower scores in the emotional, mind/body, social, treatment and total FertiQoL domains. Multivariate analysis showed male gender, lower education level and Caucasian/European ethnicity to be significantly associated with higher QoL.Conclusions: Despite governmental funding of IVF, immigrants experience reduced fertility QoL, implying cost is not the only barrier to IVF use. The reduced QoL may stem from cross-cultural differences in infertility perception. This population may be at greater risk for depression and anxiety and should be flagged accordingly.Tweetable Abstract: Immigrants' fertility QoL is lower despite publicly funded IVF implying cost is not the only barrier to IVF use. [ABSTRACT FROM AUTHOR]- Published
- 2017
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17. Care-related predictors for negative intrusive thoughts after prostate cancer diagnosis-data from the prospective LAPPRO trial.
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Thorsteinsdottir, Thordis, Valdimarsdottir, Heiddis, Hauksdottir, Arna, Stranne, Johan, Wilderäng, Ulrica, Haglind, Eva, and Steineck, Gunnar
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PROSTATE cancer ,DIAGNOSIS ,QUALITY of life ,MENTAL depression ,PROSTATECTOMY ,PSYCHOLOGICAL well-being ,CLINICAL trials ,PAIN & psychology ,MENTAL health ,AFFECT (Psychology) ,LONGITUDINAL method ,UNCERTAINTY ,SECONDARY analysis ,PROSTATE tumors ,PSYCHOLOGY - Abstract
Objective: Negative intrusive thoughts about one's prostate cancer have been associated with depressive mood and impaired quality of life among prostate cancer patients. However, little is known about possible predictors for negative intrusive thoughts among this group. We aimed to identify health- and care-related predictors for such thoughts among a population of men newly diagnosed with prostate cancer and undergoing radical prostatectomy.Methods: In the LAPPRO-trial, 3154 men (80%) answered study-specific questionnaires at admission and 3 months after surgery. Questions concerned socio-demographics, health, uncertainty, preparedness for symptoms, and the outcome-negative intrusive thoughts. Associations between variables were analyzed by log-binominal and multivariable approach.Results: The strongest predictor of negative intrusive thoughts at admission to surgery was uncertainty of cure, followed by binge drinking, poor physical health, antidepressant medication, not being prepared for urinary symptoms, age under 55, and physical pain. Reporting it not probable to obtain urinary symptoms after surgery lowered the odds. Negative intrusive thoughts before surgery were the strongest predictor for such thoughts 3 months later followed by uncertainty of cure, physical pain, younger age, living alone, and poor self-reported physical health.Conclusions: Our findings showed an association of preoperative uncertainty of cure as well as low preparedness for well-known surgery-induced symptoms with higher occurrence of negative intrusive thoughts about prostate cancer. Future studies should examine if interventions designed to have healthcare professionals inform patients about their upcoming prostatectomy reduce patients' negative intrusive thoughts and thereby, improve their psychological well-being. [ABSTRACT FROM AUTHOR]- Published
- 2017
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18. Predictors of Reduced Health-Related Quality of Life in Adult Patients With Idiopathic Inflammatory Myopathies.
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Feldon, Michal, Farhadi, Payam Noroozi, Brunner, Hermine I., Itert, Lukasz, Goldberg, Bob, Faiq, Abdullah, Wilkerson, Jesse, Rose, Kathryn M., Rider, Lisa G., Miller, Frederick W., and Giannini, Edward H.
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QUALITY of life ,MENTAL health ,HEALTH status indicators ,RESEARCH funding ,SURVEYS ,MYOSITIS ,PREDICTIVE tests ,ACQUISITION of data ,CROSS-sectional method ,PSYCHOLOGY ,DIAGNOSIS - Abstract
Objective: Extensive studies on health-related quality of life (HRQoL) in idiopathic inflammatory myopathies (IIMs) are lacking. Our objective was to document HRQoL and to identify factors associated with a reduced HRQoL in patients with IIM.Methods: A total of 1,715 patients (median age 49.9 years, 70% female, 87% white) who met probable or definite Bohan and Peter criteria or Griggs criteria for myositis were included from the Myovision registry. HRQoL was ascertained using the Short Form 12 (SF-12) health survey questionnaire. HRQoL physical component summary (PCS) and mental component summary (MCS) scores in relation to different patient and disease characteristics were compared to scores from matched normative data from the US general population and rheumatoid arthritis (RA) patients. Bivariate and multiple linear regression analyses were performed to assess the association between HRQoL and patient and disease parameters.Results: The mean SF-12 summary scores were significantly lower in IIM patients than in the normative and RA populations. A diagnosis of inclusion body myositis, older age, patient-reported negative effect of disease on work, presence of another co-occurring autoimmune disease, polypharmacy, and IIM-associated lung disease and joint involvement were significantly associated with lower PCS scores. Lower MCS scores were associated with joint involvement and a negative effect of disease on work.Conclusion: In this large study of patient-reported outcomes in IIM, an association was found between multiple disease characteristics and reduced HRQoL, mostly in the physical domain. In the US, the HRQoL of IIM patients was found to be lower than that of the general population and RA patients. [ABSTRACT FROM AUTHOR]- Published
- 2017
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19. Empowerment in adolescents and young adults with cancer: Relationship with health-related quality of life.
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Kaal, Suzanne E.J., Husson, Olga, van Duivenboden, Saskia, Jansen, Rosemarie, Manten‐Horst, Eveliene, Servaes, Petra, Prins, Judith B., van den Berg, Sanne W., and van der Graaf, Winette T.A.
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CANCER in adolescence ,QUALITY of life ,HEALTH of young adults ,SOCIODEMOGRAPHIC factors ,SOCIAL support ,PSYCHOLOGICAL distress ,MENTAL health ,TUMOR treatment ,TUMORS & psychology ,PATIENT participation ,ADAPTABILITY (Personality) ,AUTONOMY (Psychology) ,HEALTH status indicators ,MEDICAL needs assessment ,MULTIVARIATE analysis ,POWER (Social sciences) ,PSYCHOLOGICAL stress ,TUMORS ,TUMOR classification ,PSYCHOLOGY - Abstract
Background: The difficulties adolescents and young adults (AYAs) encounter during a cancer experience may result in a reduction in or absence of empowerment. The aims of the current study were to assess levels of empowerment and associated (demographic, clinical, or psychological) factors and examine the association between empowerment and health-related quality of life (HRQOL) among AYA patients with cancer.Methods: Patients aged 18 to 35 years at time of cancer diagnosis and who were seen by 1 of the members of the specialized multidisciplinary AYA team of the Radboud University Medical Center were invited to complete questionnaires regarding empowerment; HRQOL; and sociodemographic, clinical, and psychological characteristics (autonomy, coping, unmet social support needs, and psychological distress).Results: A total of 83 AYA patients completed the questionnaires. The mean age of the participants at the time of diagnosis was 27.5 years. The vast majority had been treated with chemotherapy (86%), had a more advanced stage of disease, and had completed treatment at the time of participation (74%). The mean empowerment level was 154.1 (standard deviation, 17.8) with a range of 114 to 200. Multivariate analysis demonstrated that the autonomy subscales of self-awareness (β = .35), capacity for managing new situations (β = .19), and social support (β = .35) were found to be positively associated with empowerment. Coping difficulties (β = -.19) were found to be negatively associated with empowerment. Empowerment was independently associated with physical (β = .31), psychological (β = .50), social (β = .39), religious (β = .33), and total HRQOL (β = .52; all P<.01).Conclusions: Low levels of empowerment were associated with low levels of autonomy and social support, female sex, and coping difficulties among AYA patients with cancer. Recognizing these patients as candidates for empowerment interventions ultimately could help to improve HRQOL in late adolescence and young adulthood. Cancer 2017;123:4039-47. © 2017 The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes. [ABSTRACT FROM AUTHOR]- Published
- 2017
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20. Three sides to a story: Child, parent, and nurse perspectives on the child's experience during hematopoietic stem cell transplantation.
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Ullrich, Christina K., Rodday, Angie Mae, Bingen, Kristin M., Kupst, Mary Jo, Patel, Sunita K., Syrjala, Karen L., Harris, Lynnette L., Recklitis, Christopher J., Chang, Grace, Guinan, Eva C., Terrin, Norma, Tighiouart, Hocine, Phipps, Sean, and Parsons, Susan K.
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PEDIATRIC surgery ,HEMATOPOIETIC stem cell transplantation ,PARENT attitudes ,NURSES' attitudes ,QUALITY of life ,MENTAL health ,TUMOR treatment ,TUMORS & psychology ,IMMUNOSUPPRESSION ,LONGITUDINAL method ,MULTIVARIATE analysis ,NURSES ,PARENTS ,REGRESSION analysis ,RESEARCH funding ,PSYCHOLOGICAL stress ,PSYCHOLOGICAL factors ,PSYCHOLOGY - Abstract
Background: The experience of children undergoing hematopoietic stem cell transplantation (HSCT), including the ways in which different participants (ie, children, parents, and nurses) contribute to the overall picture of a child's experience, is poorly characterized. This study evaluated parent, child, and nurse perspectives on the experience of children during HSCT and factors contributing to interrater differences.Methods: Participants were enrolled in a multicenter, prospective study evaluating child and parent health-related quality of life over the year after HSCT. Children (n = 165) and their parents and nurses completed the Behavioral, Affective, and Somatic Experiences Scale (BASES) at baseline (before/during conditioning), 7 days after the stem cell infusion (day+7), and 21 days after the stem cell infusion (day+21). The BASES domains included Somatic Distress, Mood Disturbance, Cooperation, and Getting Along. Higher scores indicated more distress/impairment. Repeated measures models by domain assessed differences by raters and changes over time and identified other factors associated with raters' scores.Results: Completion rates were high (≥73% across times and raters). Multivariate models revealed significant time-rater interactions, which varied by domain. For example, parent-rated Somatic Distress scores increased from baseline to day+7 and remained elevated at day+21 (P < .001); children's scores were lower than parents' scores across time points. Nurses' baseline scores were lower than parents' baseline scores, although by day+21 they were similar. Older child age was associated with higher Somatic Distress and Mood Disturbance scores. Worse parent emotional functioning was associated with lower scores across raters and domains except for Cooperation.Conclusions: Multirater assessments are highly feasible during HSCT. Ratings differ by several factors; considering ratings in light of such factors may deepen our understanding of the child's experience. Cancer 2017;123:3159-66. © 2017 American Cancer Society. [ABSTRACT FROM AUTHOR]- Published
- 2017
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21. Feasibility, acceptability and preliminary psychological benefits of mindfulness meditation training in a sample of men diagnosed with prostate cancer on active surveillance: results from a randomized controlled pilot trial.
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Victorson, David, Hankin, Vered, Burns, James, Weiland, Rebecca, Maletich, Carly, Sufrin, Nathaniel, Schuette, Stephanie, Gutierrez, Bruriah, and Brendler, Charles
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SURVEYS ,MEDITATION ,MINDFULNESS ,DIAGNOSIS ,PROSTATE cancer ,RANDOMIZED controlled trials ,ANXIETY treatment ,QUALITY of life ,TREATMENT of psychological stress ,ANXIETY ,COMPARATIVE studies ,RESEARCH methodology ,MEDICAL cooperation ,MENTAL health ,PROSTATE tumors ,RESEARCH ,PILOT projects ,EVALUATION research ,DISEASE complications ,PSYCHOLOGY - Abstract
Objective: In a pilot randomized controlled trial, examine the feasibility and preliminary efficacy of an 8-week, mindfulness training program (Mindfulness Based Stress Reduction) in a sample of men on active surveillance on important psychological outcomes including prostate cancer anxiety, uncertainty intolerance and posttraumatic growth.Methods: Men were randomized to either mindfulness (n = 24) or an attention control arm (n = 19) and completed self-reported measures of prostate cancer anxiety, uncertainty intolerance, global quality of life, mindfulness and posttraumatic growth at baseline, 8 weeks, 6 months and 12 months.Results: Participants in the mindfulness arm demonstrated significant decreases in prostate cancer anxiety and uncertainty intolerance, and significant increases in mindfulness, global mental health and posttraumatic growth. Participants in the control condition also demonstrated significant increases in mindfulness over time. Longitudinal increases in posttraumatic growth were significantly larger in the mindfulness arm than they were in the control arm.Conclusions: While mindfulness training was found to be generally feasible and acceptable among participants who enrolled in the 8-week intervention as determined by completion rates and open-ended survey responses, the response rate between initial enrollment and the total number of men approached was lower than desired (47%). While larger sample sizes are necessary to examine the efficacy of mindfulness training on important psychological outcomes, in this pilot study posttraumatic growth was shown to significantly increase over time for men in the treatment group. Mindfulness training has the potential to help men cope more effectively with some of the stressors and uncertainties associated with active surveillance. Copyright © 2016 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]- Published
- 2017
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22. A review of muscle- and performance-based assessment instruments in DM1.
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Symonds, Tara, Campbell, Patrick, and Randall, Jason A.
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QUALITY of life ,MENTAL health ,FATIGUE (Physiology) ,NEUROPSYCHOLOGICAL tests ,MEDLINE ,MUSCLE strength ,ONLINE information services ,MYOTONIA atrophica ,PSYCHOMETRICS ,RESEARCH evaluation ,SKELETAL muscle ,DISEASE complications ,PSYCHOLOGY ,DIAGNOSIS - Abstract
Introduction: Many outcome assessments used in myotonic dystrophy type 1 (DM1) were developed in other populations. Therefore, reliability and validity of these must be established in DM1 populations.Methods: A structured literature review was conducted to identify muscle strength and performance-based functional outcome assessments used in DM1 and to review the DM1-specific reliability and validity evidence for those outcome assessments.Results: Eighteen articles met inclusion criteria and were included in the review. The quantitative muscle testing technique and manual muscle testing were the key assessments of muscle strength. Reliability and validity evidence was also noted for several functional assessments of upper extremity (e.g., Purdue Pegboard Test) and lower extremity function (6-Minute Walk Test).Conclusions: This review identified a few measures with encouraging reliability and validity for use in a DM1 populations but highlighted the need for more research. Muscle Nerve 56: 78-85, 2017. [ABSTRACT FROM AUTHOR]- Published
- 2017
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23. Understanding the lived experience of women before and after fistula repair: a qualitative study in Kenya.
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Khisa, W, Wakasiaka, S, McGowan, L, Campbell, M, and Lavender, T
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VAGINAL fistula ,VAGINAL surgery ,PHENOMENOLOGY ,QUALITATIVE research ,MENTAL health services ,MENTAL health ,QUALITY of life ,GYNECOLOGIC surgery ,LONGITUDINAL method ,SOCIAL skills ,PSYCHOLOGY - Abstract
Objective: To gain understanding of the first-hand experience of women prior to and following repair of a vaginal fistula, to determine the most effective support mechanisms.Design: Qualitative phenomenological study using a series of in-depth semi-structured interviews at two time points: prior to fistula repair and 6 months post-surgery. Data were analysed thematically.Setting: Three fistula clinics in three districts in Kenya.Population: A purposive sample of 16 women suffering with vaginal fistula who were seeking fistula repair.Methods: Thrity-two semi-structured interviews were conducted.Results: The two main themes represented the women's journeys from social isolation to social reintegration. Women felt euphoric following fistula repair, believing that a 'miracle' had occurred. However, the 'post-miracle phase' demonstrated that the social and psychological impact of fistula leaves scars that are not easily healed, even when fistula repair is successful.Conclusion: Women's experiences of living with fistula have an impact beyond that which can be repaired solely by surgery. The findings from this study support the need for more active psychological assessment in the management of women with fistula, and the role of targeted psychological support in any package of care given in the post repair phase. The format of this support requires further study. Engagement by health professionals with the wider community could raise awareness of the causes of fistula, and provide support for significant others who may also be feeling vulnerable. It is likely that the collaborative efforts from health professionals and community members will provide the most effective support.Tweetable Abstract: Fistula surgery alone is insufficient for women's physical, social and psychological recovery. [ABSTRACT FROM AUTHOR]- Published
- 2017
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24. Palliative care and spiritual well-being in lung cancer patients and family caregivers.
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Sun, Virginia, Kim, Jae Y., Irish, Terry L., Borneman, Tami, Sidhu, Rupinder K., Klein, Linda, and Ferrell, Betty
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LUNG cancer patients ,PALLIATIVE treatment ,SPIRITUAL well-being ,QUALITY of life ,CANCER patient psychology ,PSYCHOLOGY of caregivers ,LUNG cancer treatment ,MENTAL health ,TREATMENT of lung tumors ,HEALTH care teams ,INTERPROFESSIONAL relations ,LONGITUDINAL method ,LUNG cancer ,RESEARCH methodology ,LUNG tumors ,RESEARCH funding ,SPIRITUALITY ,TUMOR classification ,TREATMENT effectiveness ,PSYCHOLOGY - Abstract
Background: Spiritual well-being is an important dimension of quality of life (QOL) and is a core component of quality oncology and palliative care. In this analysis, we aimed to describe spiritual well-being outcomes in a National Cancer Institute (NCI)-supported Program Project that tested the effectiveness of an interdisciplinary palliative care intervention in lung cancer patients and their family caregivers (FCGs).Methods: Patients undergoing treatments for NSCLC and their FCGs were enrolled in a prospective, quasi-experimental study. Patients and FCGs in the intervention group were presented at interdisciplinary care meetings and received four educational sessions that included one session focused on spiritual well-being. Spiritual well-being for patients was measured using the FACIT-Sp-12, and FCG spiritual well-being was measured using the COH-QOL-FCG spiritual well-being subscale. Multivariate analysis of covariance was undertaken for subscale and item scores at 12 weeks, controlling for baseline, by religious affiliations (yes or no) and group assignment.Results: Religiously affiliated patients reported better scores in the Faith subscale and items on finding strength and comfort in faith and spiritual beliefs compared to non-affiliated patients. Non-affiliated patients had better scores for feeling a sense of harmony within oneself. By group, patients who received the intervention had significantly better scores for the Meaning/Peace subscale.Conclusions: Our findings support the multidimensionality of spiritual well-being that includes constructs such as meaning and faith for lung cancer patients and FCGs with or without religious affiliations. Palliative care interventions should include content that targets the spiritual needs of both patients and FCGs. Copyright © 2015 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]- Published
- 2016
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25. The effectiveness of bowel and bladder interventions in children with spina bifida.
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Smith, Kathryn, Neville‐Jan, Ann, Freeman, Kurt A, Adams, Elizabeth, Mizokawa, Stacey, Dudgeon, Brian J, Merkens, Mark J, and Walker, William O
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SPINA bifida ,QUALITY of life ,INTESTINAL diseases ,BOWEL & bladder training ,SUBSET selection ,MENTAL health ,FUNCTIONAL assessment ,PSYCHOLOGY of parents ,TREATMENT effectiveness ,URINATION disorders ,SEVERITY of illness index ,INTERMITTENT urinary catheterization ,DISEASE complications ,PSYCHOLOGY ,THERAPEUTICS - Abstract
Aim: Using the World Health Organization International Classification of Functioning, Disability and Health (ICF), the aim of this study was to identify effective strategies for managing urinary and bowel complications resulting from spina bifida.Method: Charts of 210 children between 4- and 13-years-old with spina bifida were reviewed to quantify medical interventions and continence status. Standardized quality of life (QOL) questionnaires were administered to a subset of participants; child and parent interviews were carried out to examine the experience of living with bowel and bladder incontinence. Practitioners were also interviewed to understand their perspectives of intervention effectiveness.Results: Chart review indicated less than half of children were continent for bowel and bladder. More variability existed in bowel continence programs, and practitioners considered bowel continence more difficult to achieve than bladder continence. No significant associations were found between continence status and QOL measures. Interviews, however, reflected how managing continence at home and school more broadly affects QOL. Among practitioners, some focused primarily on optimizing physical health while others focused on activity and participation.Interpretation: While continence is a goal, programs used to achieve this are individualized and outcomes may be affected by differential treatment effects, environmental factors, and/or stigma experienced by children. [ABSTRACT FROM AUTHOR]- Published
- 2016
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26. Patient-reported outcomes measure for children born preterm: validation of the SOLE VLBWI Questionnaire, a new quality of life self-assessment tool.
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Olivieri, Ivana, M Bova, Stefania, Fazzi, Elisa, Ricci, Daniela, Tinelli, Francesca, Montomoli, Cristina, Rezzani, Cristiana, Balottin, Umberto, Orcesi, Simona, Ariaudo, G., Capone, L., Spairani, S., Stronati, M., Figar, T., Mastrangelo, M., Krachmalnicoff, A., Lista, G., Accorsi, P., Martelli, P., and Rossi, A.
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QUALITY of life ,SELF-evaluation ,HISTORY of medicine ,QUESTIONNAIRES ,CRONBACH'S alpha ,STATISTICAL correlation ,LOW birth weight ,MENTAL health ,PSYCHOMETRICS ,RESEARCH evaluation ,PSYCHOLOGY - Abstract
Aim: This study was conducted to develop and validate a new self-report questionnaire for measuring quality of life (QoL), at school age, in children with a very low birthweight (VLBW).Method: Through a focus group approach, children were involved directly in defining the questionnaire items, which were presented as illustrations rather than written questions. This preliminary validation of the questionnaire was conducted in 152 participants with VLBW (aged 7-11y) randomly selected from the five participating Italian centres. The questionnaire was completed by children and parents separately; data on children's demographic and medical history, and intellectual, adaptive, and behavioural functioning were collected using standardized scales. All the children also completed the Paediatric Quality of Life Inventory (PedsQL), another Italian-language measure of QoL in children.Results: Our questionnaire was readily accepted and understood, and quick to complete. The Cronbach's alpha value showed it to be a reliable instrument. The child-compiled version correlated well with the PedsQL, whereas no correlations emerged with the other scales used, IQ, or degree of impairment. Conversely, these variables correlated significantly with the parent-compiled version. Children's and parents' answers were divergent on practically all the items.Interpretation: The results confirm the validity of the new instrument and highlight a poor overlap between parents' and children's perspectives. [ABSTRACT FROM AUTHOR]- Published
- 2016
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27. Mental Fitness for patients with acute coronary syndrome: A randomized clinical trial.
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Chiavarino, Claudia, Cavallero, Erika, Rabellino, Daniela, Palumbo, Luigi, Bianchino, Claudia, Gaita, Fiorenzo, Bergerone, Serena, and Bara, Bruno G.
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COGNITIVE development ,ACUTE coronary syndrome ,RANDOMIZED controlled trials ,PSYCHOLOGICAL tests ,HEART beat ,EXERCISE & psychology ,QUALITY of life ,MENTAL health ,ADAPTABILITY (Personality) ,COGNITION ,COMPARATIVE studies ,HEALTH attitudes ,LONGITUDINAL method ,RESEARCH methodology ,MEDICAL cooperation ,PATIENT education ,RESEARCH ,EVALUATION research ,TREATMENT effectiveness ,BLIND experiment ,PSYCHOLOGY - Abstract
Objectives: The aim of this study was to verify the efficacy of a manualized, cognitively oriented psychological intervention, called Mental Fitness, in improving the mental and physical health of patients with acute coronary syndrome (ACS). Mental Fitness is a small-group four-session treatment aimed at increasing awareness of one's own bodily perceptions, emotions, and thoughts and is overall tailored on participants' perception of control over their health.Design: Prospective randomized controlled single-blind trial.Methods: Patients with ACS were recruited within a week from their acute cardiac event. Patients in the intervention group underwent one of two variants of Mental Fitness, depending on their perceived (internal or external) control over their health. Patients in the control group underwent standard treatment. All the patients were submitted to a clinical and psychological follow-up for 8 months.Results: The patients who underwent the Mental Fitness intervention (N = 31) showed, compared to the control patients (N = 34), increased quality of life in its physical, psychological, social and environmental domains, more functional emotional and problem-centred coping strategies, and higher emotional awareness. They also showed improved high-density lipoprotein cholesterol, triglycerides, heart rate, and left ventricular ejection fraction compared to the controls. In addition, they were more successful in maintaining physical exercise.Conclusions: This study demonstrates the efficacy of Mental Fitness in modifying specific psychological and physical variables conditioning cardiological patients' prognosis. It also confirms the importance of differentiating psychological interventions based on the psychological characteristics of the patients. Statement of contribution What is already known on this subject? Traditional symptom-based interventions in heart disease are aimed at diagnosing and reducing psychological symptomatology (e.g., depression), but recent work has shown the usefulness of orienting psychological interventions to patients' representations of themselves and of the world and to how such representations influence their thoughts, feelings, and behaviours (e.g., Chiavarino et al., ). What does this study add? Mental Fitness, by working on awareness of bodily perceptions, emotions, and thoughts, leads to positive changes in physical and psychological health. Mental Fitness is a cost-effective psychological intervention that adds significantly to the effectiveness of standard medical care. [ABSTRACT FROM AUTHOR]- Published
- 2016
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28. Parent-reported multi-national study of the impact of congenital and childhood onset myotonic dystrophy.
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Johnson, Nicholas E, Ekstrom, Anne‐Berit, Campbell, Craig, Hung, Man, Adams, Heather R, Chen, Wei, Luebbe, Elizabeth, Hilbert, James, Moxley, Richard T, Heatwole, Chad R, Ekstrom, Anne-Berit, and Moxley, Richard T 3rd
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MYOTONIA atrophica ,SYMPTOMS ,COMMUNICATIVE disorders in children ,FATIGUE (Physiology) ,HEART diseases ,QUALITY of life ,MENTAL health ,AGE factors in disease ,COMMUNICATIVE disorders ,GASTROINTESTINAL diseases ,INTERNATIONAL relations ,PSYCHOLOGY of parents ,SURVEYS ,PSYCHOLOGY - Abstract
Aim: The frequency and impact of symptoms experienced by patients with congenital, childhood, and juvenile-onset myotonic dystrophy (CDM/ChDM/JDM) is not documented. This report identifies symptomatic areas with the greatest disease burden in an international population of patients with early-onset myotonic dystrophy type-1 (DM1).Method: We distributed surveys to parents of patients with CDM/ChDM/JDM. Patients with CDM/ChDM/JDM were members of the US National Registry of DM1 Patients and Family Members, the Canadian Neuromuscular Disease Registry, or the Swedish Health System. Surveys inquired about 325 symptoms and 20 themes associated with CDM/ChDM/JDM. Parents identified the importance of each symptom and theme to their affected child. The prevalence of each symptom and theme were compared across subgroups of patients. The statistical analysis was performed using Fisher's exact and Kruskal-Wallis tests.Results: One hundred and fifty parents returned surveys. The most frequently reported symptomatic themes in children were issues involving communication (81.7%) and problems with hands or fingers (79.6%). Problems with communication and fatigue were the issues that were reported to have the greatest impact on childrens' lives, while 24.1% of children reported cardiac disorders and 15.8% had problems with anesthesia.Interpretation: A range of symptoms contribute to the burden of disease faced by children with DM1. Many of these symptoms are under-recognized. [ABSTRACT FROM AUTHOR]- Published
- 2016
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29. Patients are dissatisfied with information provision: perceived information provision and quality of life in prostate cancer patients.
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Lamers, Romy E. D., Cuypers, Maarten, Husson, Olga, Vries, Marieke, Kil, Paul J. M., Ruud Bosch, J. L. H., and Poll‐Franse, Lonneke V.
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PROSTATE cancer patients ,CANCER patients ,QUALITY of life ,CROSS-sectional method ,MULTIVARIATE analysis ,REGRESSION analysis ,MENTAL health ,PROSTATE tumors ,EMOTIONS ,LONGITUDINAL method ,PATIENT education ,PATIENT satisfaction ,PSYCHOLOGY - Abstract
Objective: To determine the satisfaction with information received by prostate cancer survivors and associations with health-related quality of life (HRQoL) and illness perception.Methods: A cross-sectional study was performed among 999 patients diagnosed between 2006 and 2009. All patients received a questionnaire on HRQoL (EORTC QLQ-C30), illness perception (B-IPQ) and satisfaction with information provision (EORTC QLQ-INFO-25). Multivariate regression analyses were performed to assess the association between satisfaction with information provision and HRQoL as well as illness perception.Results: Response rate was 70% (N = 697), 34% (N = 222) indicated to be dissatisfied with the information received. Multivariate linear regression analyses showed a significant positive association between satisfaction with information provision and global health (P = <0.001), emotional functioning (P = 0.004), social functioning (P = 0.027), physical functioning (P = 0.002) and role functioning (P = 0.001). Satisfaction was negatively associated with illness perception subscales on consequences (P = 0.020), timeline (P = 0.031), personal control (P = 0.013), treatment control (P < 0.001), illness concern (P < 0.001), coherence (P = 0.001) and emotional representation (P = 0.004). Hence, more satisfied patients reported fewer consequences of disease, illness concern and emotional representation, but higher personal and treatment control and coherence.Conclusions: A third of all prostate cancer survivors reported to be dissatisfied with the information received and scored worse on HRQoL and illness perception. A prospective randomized study is needed to study the effect of an intervention that improves information provision on HRQoL and illness perception outcomes. Copyright © 2015 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]- Published
- 2016
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30. Health-related quality of life in patients with Duchenne muscular dystrophy: a multinational, cross-sectional study.
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Landfeldt, Erik, Lindgren, Peter, Bell, Christopher F, Guglieri, Michela, Straub, Volker, Lochmüller, Hanns, Bushby, Katharine, and Lochmüller, Hanns
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DISEASE progression ,MUSCULAR dystrophy ,NEUROMUSCULAR diseases ,QUALITY of life ,ACTIVE aging ,MENTAL health ,CAREGIVERS ,DUCHENNE muscular dystrophy ,PARENTS ,RESEARCH funding ,CROSS-sectional method ,PSYCHOLOGY - Abstract
Aim: To estimate health-related quality of life (HRQOL) in patients with Duchenne muscular dystrophy (DMD).Method: HRQOL was assessed using the Health Utilities Index Questionnaire (HUI) and the Pediatric Quality of Life Inventory (PedsQL) neuromuscular module version 3.0 online. Results were stratified by disease stage (early/late ambulatory/non-ambulatory) and caregivers' perceptions of patients' health and mental status.Results: A total of 770 patient-caregiver pairs (173 German, 122 Italian, 191 UK, and 284 USA) participated. Most caregivers (>84%) perceived their patients as happy/somewhat happy and in excellent/very good/good health, irrespective of current ambulatory class. In contrast, mean patient utility (reflecting public preferences: 0, dead; 1, perfect health) deteriorated with disease course, from 0.75 in early ambulatory males to 0.15 in the most severely affected patients. Mean patient PedsQL scores (0-100, higher score indicating better HRQOL) decreased from 80 to 57 across ambulatory classes.Interpretation: HRQOL in DMD, measured through public preferences, is substantially impaired in relation to the general population and significantly associated with disease progression. Still, most patients are perceived as happy and in good health by their caregivers, indicating that influential domains of HRQOL remain intact through the disease progression. Our findings emphasize the challenges in measuring HRQOL in a rare, progressive childhood condition such as DMD. [ABSTRACT FROM AUTHOR]- Published
- 2016
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31. Major depressive disorder, personality disorders, and coping strategies are independent risk factors for lower quality of life in non-metastatic breast cancer patients.
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Brunault, Paul, Champagne, Anne‐Laure, Huguet, Grégoire, Suzanne, Isabelle, Senon, Jean‐Louis, Body, Gilles, Rusch, Emmanuel, Magnin, Guillaume, Voyer, Mélanie, Réveillère, Christian, and Camus, Vincent
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BREAST cancer ,MENTAL depression ,PERSONALITY disorders ,PSYCHOLOGICAL adaptation ,QUALITY of life ,PSYCHOLOGY ,DIAGNOSIS of mental depression ,PERSONALITY disorder diagnosis ,MENTAL health ,BREAST tumors ,ADAPTABILITY (Personality) ,EMOTIONS ,PAIN ,PERSONALITY ,QUESTIONNAIRES ,CROSS-sectional method ,SEVERITY of illness index ,CANCER & psychology - Abstract
Objective: Our aim was to identify risk factors for lower quality of life (QOL) in non-metastatic breast cancer patients.Methods: Our study included 120 patients from the University Hospital Centers of Tours and Poitiers. This cross-sectional study was conducted 7 months after patients' breast cancer diagnosis and assessed QOL (Quality of Life Questionnaire Core 30 = QLQ-C30), socio-demographic characteristics, coping strategies (Brief-COPE), physiological and biological variables (e.g., initial tumor severity and types of treatment received), the existence of major depressive disorder (Mini International Neuropsychiatric Interview), and pain severity (Questionnaire de Douleur Saint Antoine). We assessed personality disorders 3 months after diagnosis (Vragenlijst voor Kenmerken van de Persoonlijkheid questionnaire). We used multiple linear regression models to determine which factors were associated with physical, emotional, and global QOL.Results: Lower physical QOL was associated with major depressive disorder, younger age, a more severe initial tumor stage, and the use of the behavioral disengagement coping. Lower emotional QOL was associated with major depressive disorder, the existence of a personality disorder, a more severe pain level, higher use of self-blame, and lower use of acceptance coping strategies. Lower global QOL was associated with major depressive disorder, the existence of a personality disorder, a more severe pain level, higher use of self-blame, lower use of positive reframing coping strategies, and an absence of hormone therapy.Conclusions: Lower QOL scores were more strongly associated with variables related to the individual's premorbid psychological characteristics and the manner in which this individual copes with the cancer (e.g., depression, personality, and coping) than to cancer-related variables (e.g., treatment types and cancer severity). Copyright © 2015 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]- Published
- 2016
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32. Does screening for physical and psychosocial symptoms vary between medical oncology treatment centres?
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Zucca, Alison, Sanson‐Fisher, Rob, Waller, Amy, Carey, Mariko, Boyes, Allison W., and Proietto, Anthony
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CANCER treatment ,PSYCHOSOCIAL factors ,MENTAL health of cancer patients ,MEDICAL screening ,PSYCHOLOGICAL distress ,ANXIETY diagnosis ,DIAGNOSIS of mental depression ,MENTAL health ,QUALITY of life ,TUMOR treatment ,ANXIETY ,TUMORS & psychology ,MENTAL depression ,FATIGUE (Physiology) ,HEALTH facilities ,NAUSEA ,ONCOLOGY ,PAIN ,PHYSICIAN-patient relations ,DEPARTMENTS ,CROSS-sectional method ,DIAGNOSIS ,PSYCHOLOGY - Abstract
Objective: Our aim is to examine whether provider screening for physical and emotional symptoms, as reported by medical oncology outpatients, varies across medical oncology treatment centres.Methods: A cross-sectional sample of 716 patients attending the outpatient medical oncology department of six public cancer treatment centres across five Australian states participated. Four patient-report survey items explored how often patients were specifically asked by clinical staff at the treatment centre about their (i) emotional distress (anxiety, distress and depression), (ii) pain, (iii) fatigue and (iv) other physical symptoms (e.g. nausea and constipation). Asking at less than half of all appointments was classified as infrequent screening.Results: No significant associations were found between treatment centre and symptom screening for emotional distress (p = 0.65), pain (p = 0.21), fatigue (p = 0.95) and other physical symptoms (p = 0.40). The proportion of patients who were regularly screened versus infrequently screened was significantly higher for physical symptoms than emotional symptoms (p < 0.001): 36% infrequently screened for emotional distress (range: 33-45%), 15% infrequently screened for pain (range: 9-21%), 16% infrequently screened for fatigue (range: 15-19%) and 11% infrequently screened for other physical symptoms (range: 5-17%).Conclusions: No significant variation in symptom screening was found across treatment centres. While the majority of patients received recommended care, treatment centres must continue to improve symptom screening rates, particularly for emotional distress. However, screening is only the first step and must be accompanied by the offer of help and provision of help to relieve patient suffering. [ABSTRACT FROM AUTHOR]- Published
- 2016
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33. Development of health-related quality of life and symptoms of anxiety and depression among persons diagnosed with cancer during adolescence: a 10-year follow-up study.
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Ander, Malin, Grönqvist, Helena, Cernvall, Martin, Engvall, Gunn, Hedström, Mariann, Ljungman, Gustaf, Lyhagen, Johan, Mattsson, Elisabet, Essen, Louise, Grönqvist, Helena, Hedström, Mariann, and von Essen, Louise
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CANCER in adolescence ,QUALITY of life ,SYMPTOMS ,ANXIETY ,MENTAL depression ,PSYCHOLOGY ,ANXIETY diagnosis ,DIAGNOSIS of mental depression ,TUMOR diagnosis ,TUMORS & psychology ,COMPARATIVE studies ,HEALTH surveys ,LONGITUDINAL method ,RESEARCH methodology ,MEDICAL cooperation ,MENTAL health ,PSYCHOLOGICAL tests ,RESEARCH ,TIME ,EVALUATION research - Abstract
Objective: The main aim was to investigate the development of health-related quality of life (HRQOL) and symptoms of anxiety and depression in a cohort diagnosed with cancer during adolescence from shortly after up to 10 years after diagnosis.Methods: Participants (n = 61) completed the SF-36 and the HADS shortly; six, 12, and 18 months; and two, three, four, and 10 years (n = 28) after diagnosis. Polynomial change trajectories were used to model development.Results: Polynomial change trajectories showed an initial increase which abated over time into a decrease which abated over time for the SF-36 subscales Mental Health and Vitality; an initial decline which abated over time into an increase for HADS anxiety; and an initial decline which abated over time into an increase which abated over time for HADS depression. The SF-36 mental component summary showed no change from two to 10 years after diagnosis whereas the SF-36 physical component summary showed an increase from two years after diagnosis which declined over time. Ten years after diagnosis 29% reported possible anxiety.Conclusions: Development of HRQOL and symptoms of anxiety and depression appears to be non-linear among persons diagnosed with cancer during adolescence. Well into permanent survivorship an increase in symptoms of anxiety is shown and approximately a third of the participants report possible anxiety. The findings indicate the need for: studies designed to pinpoint the times of highest psychological risk, clinical follow-up focusing on psychological problems, and development of effective psychological interventions for survivors of adolescent cancer. © 2015 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd. [ABSTRACT FROM AUTHOR]- Published
- 2016
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34. Understanding fatigue in paediatric multiple sclerosis: a systematic review of clinical and psychosocial factors.
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Carroll, Susan, Chalder, Trudie, Hemingway, Cheryl, Heyman, Isobel, and Moss‐Morris, Rona
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MENTAL fatigue ,MULTIPLE sclerosis treatment ,PSYCHOSOCIAL factors ,QUALITY of life ,DEMYELINATION ,DEPRESSION in adolescence ,MENTAL health ,MULTIPLE sclerosis ,FATIGUE (Physiology) ,SYSTEMATIC reviews ,DISEASE complications ,PSYCHOLOGY - Abstract
Aim: Fatigue in children and adolescents with multiple sclerosis (caMS) is currently poorly understood. This review aimed to provide greater insight into this area and direction for future research by evaluating evidence of associations between fatigue and clinical, psychological, and social factors in caMS.Method: Studies were identified by searching online databases, hand-searching reference lists, and requesting unpublished literature from key authors. Studies that examined fatigue in relation to at least one clinical, psychological, or social factor in caMS were included. Data on design, sample characteristics, measures of fatigue, clinical, psychological, and social variables, and key findings were extracted. Twelve studies were narratively synthesized.Results: Clinical factors appeared largely unrelated to fatigue, whereas associations between fatigue and tests of neurocognitive functioning, and fatigue and diagnosable psychiatric disorders, were mixed. However, fatigue and depressed mood consistently correlated. A small number of studies indicated associations between fatigue and reduced quality of life and school performance.Interpretation: A sufficient explanatory model of fatigue in caMS is lacking as studies in this area are few and diverse. Future research should endeavour to identify potentially modifiable clinical and psychosocial factors that are associated with fatigue in caMS so that interventions targeting such factors may be developed. [ABSTRACT FROM AUTHOR]- Published
- 2016
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35. Religious beliefs, practices, and health in colorectal cancer patients in Saudi Arabia.
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Shaheen Al Ahwal, Mahmoud, Al Zaben, Faten, Sehlo, Mohammad Gamal, Khalifa, Doaa Ahmed, and Koenig, Harold G.
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COLON cancer treatment ,COLON cancer patients ,PSYCHOLOGICAL stress ,MENTAL depression ,TREATMENT duration ,PSYCHOLOGY ,RELIGION ,QUALITY of life ,ADAPTABILITY (Personality) ,COLON tumors ,ISLAM ,MENTAL health ,RECTUM tumors ,SOCIAL support ,SUICIDAL ideation ,DISEASE prevalence ,PSYCHOLOGICAL factors - Abstract
Objective: Colorectal cancer (CRC) patients experience considerable psychological stress because of changes brought on by their illness. Religion may be a resource for such patients. We examined the prevalence of religious beliefs and practices in CRC patients and correlation with demographic, social, psychological, and physical health characteristics.Methods: Seventy CRC patients (all Muslim) in Jeddah, Saudi Arabia, were surveyed using a 13-item Muslim religiosity scale. Standard measures were used to assess depressive symptoms, depressive disorder, and social support; demographic and social factors, psychiatric history, and disease factors were also measured.Results: All 70 participants (100%) engaged in group worship and prayer (Fard) five times/day, and 75.7% never skipped or combined two or more obligatory prayers; 71.4% read or recited the Qur'an several times/week or daily; 80.0% gave money to the poor each year (Zakat); 71.4% fasted throughout the month of Ramadan (Sawm) and other times as well; 91.4% said they 'definitely' experienced the presence of Allah; and 74.3% said their entire approach to life was definitely based on their religious beliefs. Overall religiosity was inversely related to depressive symptoms (B = -0.58, SE = 0.30, p = 0.026) and suicidal ideation (B = -0.07, SE = 0.03, p = 0.025), after controlling for financial status and social factors.Conclusions: Religious involvement was widespread in this sample of CRC patients in Saudi Arabia and was related to fewer depressive symptoms and less suicidal ideation. No relationship was found with stage of disease or duration of treatment. [ABSTRACT FROM AUTHOR]- Published
- 2016
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36. Smoking reduction and quality of life in chronic patients with schizophrenia in a Chinese population--A pilot study.
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Deng, Huiqiong, Wang, Jia, Zhang, Xiangyang, Ma, Mengying, Domingo, Coreen, Sun, Hongqiang, and Kosten, Thomas
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SMOKING ,SCHIZOPHRENIA ,QUALITY of life ,PUBLIC health ,TOBACCO use ,MENTAL health ,SMOKING & psychology ,CLASSIFICATION of mental disorders ,PSYCHOLOGY ,QUESTIONNAIRES ,SMOKING cessation ,ASIANS ,PILOT projects - Abstract
Background and Objectives: Tobacco use is a significant public health issue on a global scale. Prevalence of daily tobacco smoking for men in China is much higher than in the United States. Although prevailing literature suggests a negative relationship between smoking and quality of life, this pilot study sought to evaluate whether smoking reduction/cessation impacted on the perception of quality of life in an in-patient population in China.Methods: Twenty Chinese patients meeting DSM-IV criteria for schizophrenia were recruited from Beijing Hui-Long-Guan Hospital, an in-patient facility in Beijing, China, for participation in this 4-week study. Seventeen participants with schizophrenia completed the study and were included in the final analysis. Cigarette consumption was recorded daily and the World Health Organization Quality of Life-BREF (WHOQOL-BREF) was completed at baseline and at week 4. The relationships between smoking and perceived quality of life were evaluated using correlations between changes in WHOQOL-BREF and changes in cigarettes consumed as measured from baseline to week 4.Results: We found an increase in perceived quality of life in the social relationships domain with increased cigarette consumption in contrast to a decrease in this domain with decreased consumption. However, decreased cigarette consumption was associated with an increase in the psychological domain compared to the social domain.Conclusions and Scientific Significance: These associations suggest a need for interventions to improve the social relationship perceptions with any successful reduction in cigarette consumption among Chinese schizophrenics in order to match their perceived psychological improvement. [ABSTRACT FROM AUTHOR]- Published
- 2016
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37. How sickle cell disease patients experience, understand and explain their pain: An Interpretative Phenomenological Analysis study.
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Coleman, Beth, Ellis‐Caird, Helen, McGowan, John, and Benjamin, Maxwell J.
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SICKLE cell anemia ,PAIN management ,BLOOD diseases ,ETIOLOGY of diseases ,PHENOMENOLOGY ,PATIENTS ,CHRONIC pain & psychology ,QUALITY of life ,MENTAL health ,CHRONIC diseases ,CHRONIC pain ,HEALTH attitudes ,INTERVIEWING ,QUALITATIVE research ,DISEASE complications ,PSYCHOLOGY - Abstract
Objectives: Sickle cell disease (SCD) is the UK's most common blood disorder causing sickle shaped red blood cells to block small blood vessels inducing both acute and chronic pain. A crucial factor in determining quality of life for those with SCD is the severity, timing and number of painful sickling episodes. However, little research focuses on the nature of pain and so it is poorly understood. The aim of this study is to provide an in-depth and meaning led account of the experience of SCD pain.Design: Qualitative research design.Methods: Seven face-to-face semi-structured interviews were conducted. Interviews were transcribed and analysed using Interpretative Phenomenological Analysis.Results: Participants described experiencing unimaginable, agonising, continuous, inescapable and limitless pain which was almost impossible to describe; participants resorted to using analogy and personification as a way to overcome this difficulty. Participants spoke about a process where, ultimately, they felt obliged to accept their illness as it would never be cured; but were able to appreciate life and recognize positive life lessons as a result of living with SCD.Conclusions: This research indicates that therapeutic work around analogy can help individuals understand and express their pain and that current attempts to measure pain are unhelpful for SCD populations. Further research is needed across a wider SCD population to forward the findings of this qualitative study.Statement Of Contribution: What is already known on this subject? Sickle cell disease (SCD) has an impact on all aspects of a person's life (Edwards et al., 2005, International Journal of Behavioral Medicine, 12, 171). Strickland , Jackson, Gilead, McGuire, and Quarles (2001, Journal of the National Black Nurses' Association, 12, 36) suggest that one of the crucial factors in determining quality of life for those with SCD is the severity, timing and number of painful sickling episodes. Exacerbations of pain are also cited as explanation for the majority of medical contacts for people with SCD (McClish et al., 2009, Pain, 145, 246). The majority of research focuses on the consequences of pain in terms of handicap, and its impact on emotional well-being, relationships and the need for medication/hospital treatment (Booker et al., 2006, Chronic Illness, 2, 39; Weisberg et al., 2013, Journal of Hospital Medicine, 8, 42) rather than how SCD patients experience and understand their pain. However, the actual nature of pain experience in SCD is poorly understood and sub-optimally managed (Booker et al., 2006; Taylor et al., 2010, Journal of Pain and Symptom Management, 40, 416). What does this study add? The experience of SCD pain is indescribable without the use of analogy, as it is unbearable, agonising, constant, inescapable and without limit. Difficulty describing pain creates a perception of being misunderstood or minimized by professionals. Personification of pain is often employed by patients to attempt to form a relationship with pain. Current pain measures used in clinical practice are inadequate at capturing the acute and chronic SCD pain experience. [ABSTRACT FROM AUTHOR]- Published
- 2016
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38. Quality of life in amyotrophic lateral sclerosis patients and caregivers: Impact of assistive communication from early stages.
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Londral, Ana, Pinto, Anabela, Pinto, Susana, Azevedo, Luis, and De Carvalho, Mamede
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AMYOTROPHIC lateral sclerosis treatment ,MENTAL health ,QUALITY of life ,AMYOTROPHIC lateral sclerosis ,PSYCHOLOGY of caregivers ,COMMUNICATION devices for people with disabilities ,FUNCTIONAL assessment ,INTERNET ,LONGITUDINAL method ,QUESTIONNAIRES ,ASSISTIVE technology ,PAIN measurement ,PSYCHOLOGY - Abstract
Introduction: In this study we performed a longitudinal investigation to assess the impact of early introduction of assistive communication devices (ACDs) on quality of life (QoL) in amyotrophic lateral sclerosis (ALS) patients and their caregivers.Methods: Patients were followed for 7-10 months (3 evaluation periods). Bulbar-onset ALS patients (N = 27) and paired caregivers (N = 17) were included. Fifteen randomly selected patients received early support in ACD use. Patients were assessed using the ALS Functional Rating Scale-revised (ALSFRS-R), the McGill QoL (MQoL), the Communication Effectiveness Index (CETI), and performance in writing; and caregivers were assessed with the MQoL and World Health Organization Quality of Life questionnaire (WHOQOL-BREF).Results: Patients with early support had higher MQoL Psychological and MQoL Existential well-being domains; caregivers had higher MQoL Support domain and their MQoL Psychological domain positively associated with patient CETI. Most patients could communicate using a touchscreen keyboard to write, even when handwriting and speech were not possible.Conclusion: Early intervention with an ACD seems to have a positive impact on QoL and gives patients the opportunity to improve skills for communication in later disease stages. [ABSTRACT FROM AUTHOR]- Published
- 2015
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39. Distancing, self-esteem, and subjective well-being in head and neck cancer.
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Devins, Gerald M., Wong, Janice C., Payne, Ada Y. M., Lebel, Sophie, Lee, Ruth N. F., Mah, Kenneth, Irish, Jonathan, and Rodin, Gary
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HEAD & neck cancer treatment ,SELF-esteem ,WELL-being ,STEREOTYPES ,SOCIAL stigma ,ALCOHOL drinking ,MENTAL health ,QUALITY of life ,HEAD tumors ,NECK tumors ,ADAPTABILITY (Personality) ,COMPARATIVE studies ,MENTAL depression ,RESEARCH methodology ,MEDICAL cooperation ,RESEARCH ,RESEARCH funding ,SELF-perception ,SOCIAL skills ,PSYCHOLOGICAL stress ,EVALUATION research ,PSYCHOLOGICAL factors ,PSYCHOLOGY ,TUMOR treatment - Abstract
Background: Distancing (i.e. construing oneself as dissimilar to a negatively-stereotyped group) preserves self-esteem and may benefit other domains of subjective well-being. Head and neck cancer (HNC) is stigmatized because major risk factors include avoidable lifestyle variables (smoking, alcohol consumption, and human papilloma virus). Because the benefits of coping efforts, such as distancing, are most evident when people are under stress, we hypothesize that the psychosocial benefits of distancing will be most pronounced when cancer and its treatment interfere substantially with participation in valued activities and interests (i.e. high illness intrusiveness).Objective: To test whether distancing preserves self-esteem and other domains of subjective well-being (SWB) in HNC, especially when illness intrusiveness is high.Methods: Five hundred and twenty-two HNC outpatients completed a semantic-differential measure of perceived similarity to the 'cancer patient' and measures of illness intrusiveness, self-esteem, depressive symptoms, and psychological well-being in structured interviews. Evaluations of the 'cancer patient' reflected cancer stereotypes.Results: A statistically significant interaction supported the central hypothesis: When people held negative stereotypes, those who construed themselves as similar to the 'cancer patient' reported lower self-esteem than those who construed themselves as dissimilar. Distancing did not benefit other SWB variables. Some results were counter-intuitive: e.g. Emotional distress increased with increasing illness intrusiveness when people did not hold negative cancer stereotypes, but when they held highly negative stereotypes, distress decreased with increasing illness intrusiveness.Conclusions: Overall, distancing preserved self-esteem in people with HNC and was associated with benefits in other SWB domains. [ABSTRACT FROM AUTHOR]- Published
- 2015
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40. Using the Effects of Youngsters' Eyesight on Quality of Life Questionnaire to Measure Visual Outcomes in Children With Uveitis.
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Angeles-Han, Sheila T., Yeh, Steven, McCracken, Courtney, Jenkins, Kirsten, Stryker, Daneka, Myoung, Erica, Vogler, Larry B., Rouster-Stevens, Kelly, Lambert, Scott R., Harrison, Melanie J., Prahalad, Sampath, and Drews-Botsch, Carolyn
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QUALITY of life ,MENTAL health ,UVEITIS treatment ,LONGITUDINAL method ,UVEITIS ,QUESTIONNAIRES ,RESEARCH funding ,VISION ,VISION testing ,VISUAL acuity ,TREATMENT effectiveness ,RESEARCH methodology evaluation ,PSYCHOLOGY ,DIAGNOSIS - Abstract
Objective: The Effects of Youngsters' Eyesight on Quality of Life (EYE-Q) is a novel measure of vision-related quality of life (QOL) and function in children. We aim to determine the validity of the EYE-Q in childhood uveitis.Methods: We abstracted medical record data on arthritis and uveitis in a convenience sample of children with juvenile idiopathic arthritis (JIA) and/or uveitis. In addition to the EYE-Q, parents and patients completed questionnaires on overall QOL (Pediatric Quality of Life Inventory [PedsQL]), and physical functioning (Childhood Health Assessment Questionnaire [C-HAQ]).Results: Among 57 children (8 JIA, 24 JIA and uveitis, 25 uveitis alone), 102 ocular examinations were performed within 1 month of completing questionnaires. Uveitis patients had bilateral disease (69%), anterior involvement (78%), synechiae (51%), and cataracts (49%). Children with vision loss in their better eye (visual acuity [VA] 20/50 or worse) had worse EYE-Q (P = 0.006) and PedsQL (P = 0.028) scores, but not C-HAQ scores. The EYE-Q moderately correlated with logMAR VA (rs = -0.43), PedsQL (rs = 0.43), and C-HAQ (rs = -0.45), but was not correlated with anterior chamber cells or intraocular pressure. The PedsQL and C-HAQ did not correlate with VA or cells. There were strong correlations between the parent and child EYE-Q (rs = 0.62). Cronbach's α for the child report was 0.91. The EYE-Q had strong test-retest reliability (rs = 0.75).Conclusion: The EYE-Q may be an important tool in the assessment of visual outcomes in childhood uveitis and an improvement over general measures in detecting changes in vision-related function. [ABSTRACT FROM AUTHOR]- Published
- 2015
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41. Representations of Mental Health Among Middle-Aged Urban Chinese Men.
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Lu, Xuan‐Wei, Chauhan, Apurv, and Campbell, Catherine
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CONTROL (Psychology) ,CHINESE people ,PSYCHOLOGY ,CULTURE ,INCOME ,LITERACY ,MEN'S health ,MENTAL health ,METROPOLITAN areas ,PHILOSOPHY ,QUALITY of life ,STATISTICAL sampling ,PSYCHOLOGICAL stress ,SOCIAL support ,THEMATIC analysis ,ATTITUDES toward mental illness ,DESCRIPTIVE statistics ,MIDDLE age - Abstract
Little is understood by the ideas that urban Chinese population holds about mental health. Insufficient research and recognition of mental illnesses, and a dearth of social resources for mental health support and promotion limit understandings of how daily life stresses restrict the quality of life of China's urban population. Drawing on in-depth interviews with 15 middle-age urban men, we map out men's accounts of how they battle to cope with the demands of everyday social, political, and familial pressures. The study reveals that the representations of mental health are shaped by notions of control over emotions, adherence to Confucian philosophy, familial obligations, and the need to demonstrate social obedience and conformity. Data also suggest that the participants represent stable family support along with healthy social interactions as important enabling factors of positive mental health, whereas pressures of modernity are regarded as significant disruptive factors in mental health. The theory of social representations guides the process as well as analytic interpretations of this research. Copyright © 2015 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]
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- 2015
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