Quality of Life in Long-Term Forensic Psychiatric Care: Comparison of Self-Report and Proxy Assessments

ABSTRACTBackground:Dementia is a chronic illness without cure or effective treatment, which results in declining mental and physical function and assistance from others to manage activities of daily living. Many people with dementia live in long term care facilities, yet research into their quality of life (QoL) was rare until the last decade. Previous studies failed to incorporate important variables related to the facility and care provision or to look closely at the daily lives of residents. This paper presents a protocol for a comprehensive, multi-perspective assessment of QoL of residents with dementia living in long term care in Australia. A secondary aim is investigating the effectiveness of self-report instruments for measuring QoL.Methods:The study utilizes a descriptive, mixed methods design to examine how facility, care staff, and resident factors impact QoL. Over 500 residents with dementia from a stratified, random sample of 53 facilities are being recruited. A sub-sample of 12 residents is also taking part in qualitative interviews and observations.Conclusions:This national study will provide a broad understanding of factors underlying QoL for residents with dementia in long term care. The present study uses a similar methodology to the US-based Collaborative Studies of Long Term Care (CS-LTC) Dementia Care Study, applying it to the Australian setting.

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Why do they do it? Assessing self-report physical activity behavior and quality of life in individuals with multiple sclerosis

Journal of Health Psychology ◽

10.1177/1359105317739965 ◽

2017 ◽

Vol 25 (7) ◽

pp. 964-975 ◽

Cited By ~ 6

Author(s):

Kimberly S Fasczewski ◽

Sara M Rothberger ◽

Diane L Gill

Keyword(s):

Quality Of Life ◽

Physical Activity ◽

Multiple Sclerosis ◽

Self Efficacy ◽

Physical Activity Behavior ◽

Self Report ◽

Physical Activity Interventions ◽

Activity Behavior

Physical activity has been shown to effectively aid multiple sclerosis symptom management; however, individuals with multiple sclerosis tend to be inactive physically. Developing effective, sustainable, physical activity interventions involves first understanding motivators for physical activity. Open-ended surveys exploring physical activity motivators were collected from 215 individuals with multiple sclerosis. Responses indicate that self-efficacy and internalized motivation derived from physical activity outcomes were motivators for physical activity, and physical activity was cited as increasing overall quality of life. Future physical activity interventions should incorporate methods for building self-efficacy for physical activity and focus on increasing awareness of the long-term physical benefits derived from physical activity.

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Progredienzangst entlang der Überlebensspanne: Ergebnisse einer Befragung erwachsener Langzeit-Krebsüberlebender

Karger Kompass Dermatologie ◽

10.1159/000517943 ◽

2021 ◽

pp. 1-2

Author(s):

Dominik Fugmann ◽

André Karger

Keyword(s):

Quality Of Life ◽

Cancer Survivors ◽

Hormone Therapy ◽

Control Variable ◽

Self Report ◽

Fear Of Cancer Recurrence ◽

Short Version ◽

Cross Sectional

Objective: Our study analysed fear of cancer recurrence (FoR) in long-term cancer survivors in relation to medical variables, depression, anxiety, and quality of life. Methods: We present data obtained from 1,002 cancer survivors (53% male, mean age = 68 years, 26% prostate cancer, 22% breast cancer) across all cancer types 5 (N = 660) and 10 (N = 342) years after diagnosis, who were recruited via a large Clinical Cancer Registry in Germany in a cross-sectional study. FoR, depression, and anxiety were measured using validated self-report questionnaires (12-item short version of the Fear of Progression Questionnaire [FoP-Q-SF], Patient Health Questionnaire-9 [PHQ-9[, and General Anxiety Disorder-7 [GAD-7]). Hierarchical regression models were carried out with FoR as dependent variable and time since diagnosis as control variable. Results: We found high FoR-values in 17% of the cancer survivors (FoP-Q-SF total score>33). FoR was higher in the 5-year cohort (P = .028, d = 0.153). Cancer survivors were most worried about the future of the family; they report being nervous prior to doctor’s appointment and being afraid of relying on strangers help. Higher FoR was related to female gender (Beta = .149, P<.001), younger age (Beta = -.103, P<.001), low social (Beta = -.129, P<.001) and emotional functioning (Beta = -.269, P<.001), received hormone therapy (P = .025, d = 0.056), and high anxiety levels (Beta = .227, P<.001). Conclusions: Even though FoR declines slightly over time, it is still a common mental health problem for long-term survivors even 10 years after cancer diagnosis. Since FoR is associated with reduced emotional and social quality of life, patients who are at greater risk of experiencing FoR must be identified and supported. Particularly at risk are younger women who received hormone therapy.

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Long-term Outcomes in Adolescents and Adults with a Cleft Lip and/or palate: Esthetics, Employment and Functioning

10.21203/rs.3.rs-166715/v1 ◽

2021 ◽

Author(s):

Cassandra Alighieri ◽

Evelien D'haeseleer ◽

Kim Bettens ◽

Katrien Bonte ◽

Hubert Vermeersch ◽

...

Keyword(s):

Quality Of Life ◽

Well Being ◽

Self Report ◽

Control Group ◽

Older Individuals ◽

Significant Difference ◽

Adolescents And Adults ◽

The Impact

Abstract Background. To date, there seems to be no consensus on the long-term quality of life outcomes in patients living with a cleft of the lip and/or palate (CL/P) with regard to well-being and functioning. Some studies report a substantial influence of having a cleft while other studies report no influence of living with a cleft. The purpose of this study was to investigate the impact of living with a CL/P on esthetics, employment and functioning in Dutch-speaking adolescents and adults with a CL/P. Methods. 30 Patients with a CL/P (19 men and 11 women) were included in the study. The mean age of the participants was 26.93 years (SD = 11.688 years, range = 15 – 66 years). An age and gender matched control group was included consisting of 30 participants (19 men and 11 women) without a CL/P with a mean age of 26.87 years (SD = 11.729 years, range = 16-67 years). Esthetics, employment and functioning were assessed using different standardized self-report questionnaires. Results. No statistically significant difference in educational level, employment, monthly net income, marital status and having children was found between participants with and without a CL/P. In addition, the quality of life scores did not differ between the two groups. Within the group of individuals with a CL/P, the findings revealed that the proportion of participants who reported an influence of the CL/P on daily functioning, general well-being, social contacts, family life, applying for a job, work, education and leisure time differed by age. Older individuals experienced more influence of their CL/P compared to younger individuals. With regard to esthetics, the findings revealed that participants without a CL/P were less satisfied with the appearance of their jaws compared to participants with a CL/P. Conclusion. In general, the findings of our study revealed no significant differences between adolescents and adults with and without a CL/P with regard to employment and functioning. Considering age within the group of participants with a CL/P, however, the results demonstrated that older individuals were more likely to experience a negative impact of their cleft on well-being and functioning. These findings suggest that older individuals with a CL/P might benefit from additional socio-emotional support, for example peer contacts and support groups or psychological guidance. Longitudinal research on this topic is highly needed to determine possible fluctuations in the impact of living with a CL/P.

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Progredienzangst entlang der Überlebensspanne: Ergebnisse einer Befragung erwachsener Langzeit-Krebsüberlebender

Karger Kompass Onkologie ◽

10.1159/000514703 ◽

2021 ◽

pp. 1-2

Author(s):

Dominik Fugmann ◽

André Karger

Keyword(s):

Quality Of Life ◽

Cancer Survivors ◽

Hormone Therapy ◽

Control Variable ◽

Self Report ◽

Fear Of Cancer Recurrence ◽

Short Version ◽

Cross Sectional

Objective: Our study analysed fear of cancer recurrence (FoR) in long-term cancer survivors in relation to medical variables, depression, anxiety, and quality of life. Methods: We present data obtained from 1,002 cancer survivors (53% male, mean age = 68 years, 26% prostate cancer, 22% breast cancer) across all cancer types 5 (N = 660) and 10 (N = 342) years after diagnosis, who were recruited via a large Clinical Cancer Registry in Germany in a cross-sectional study. FoR, depression, and anxiety were measured using validated self-report questionnaires (12-item short version of the Fear of Progression Questionnaire [FoP-Q-SF], Patient Health Questionnaire-9 [PHQ-9[, and General Anxiety Disorder-7 [GAD-7]). Hierarchical regression models were carried out with FoR as dependent variable and time since diagnosis as control variable. Results: We found high FoR-values in 17% of the cancer survivors (FoP-Q-SF total score>33). FoR was higher in the 5-year cohort (P = .028, d = 0.153). Cancer survivors were most worried about the future of the family; they report being nervous prior to doctor’s appointment and being afraid of relying on strangers help. Higher FoR was related to female gender (Beta = .149, P<.001), younger age (Beta = -.103, P<.001), low social (Beta = -.129, P<.001) and emotional functioning (Beta = -.269, P<.001), received hormone therapy (P = .025, d = 0.056), and high anxiety levels (Beta = .227, P<.001). Conclusions: Even though FoR declines slightly over time, it is still a common mental health problem for long-term survivors even 10 years after cancer diagnosis. Since FoR is associated with reduced emotional and social quality of life, patients who are at greater risk of experiencing FoR must be identified and supported. Particularly at risk are younger women who received hormone therapy.

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Development and psychometric evaluation of the ICIQ-LTCqol: A self-report quality of life questionnaire for long-term indwelling catheter users

Neurourology and Urodynamics ◽

10.1002/nau.22729 ◽

2015 ◽

Vol 35 (3) ◽

pp. 423-428 ◽

Cited By ~ 2

Author(s):

Nikki Cotterill ◽

Sarah Fowler ◽

Miriam Avery ◽

Alan M. Cottenden ◽

Mary Wilde ◽

...

Keyword(s):

Quality Of Life ◽

Psychometric Evaluation ◽

Self Report ◽

Life Questionnaire ◽

Indwelling Catheter ◽

Quality Of Life Questionnaire ◽

Report Quality

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Abstract P831: Use of the Neuro-QoL Measures for Assessment of Contributors to Long-Term Quality of Life, Post-Aneurysmal Subarachnoid Hemorrhage

Stroke ◽

10.1161/str.52.suppl_1.p831 ◽

2021 ◽

Vol 52 (Suppl_1) ◽

Author(s):

Kayla Wynja ◽

Drew Prescott ◽

Brandon Baughman ◽

Anne W Alexandrov ◽

Xueyuan Cao ◽

...

Keyword(s):

Quality Of Life ◽

Subarachnoid Hemorrhage ◽

Social Roles ◽

Aneurysmal Subarachnoid Hemorrhage ◽

Self Report ◽

Fine Motor ◽

Lower Extremity Function ◽

Extremity Function

Background: Aneurysmal subarachnoid hemorrhage (aSAH) survivors are at high risk for poor quality of life (QoL). Standard outpatient neurologic assessment may not capture some affective and cognitive factors important for long-term QoL, and reintegration into normal social roles. The purpose of this study is to determine the utility of the Quality of Life in Neurological Disorders (Neuro-QoL) measures for assessment of such factors in nursing practice. Methods: Standard demographic and clinical characteristics were collected on patients >1 year post-aSAH, along with self-report information on seven Neuro-QoL measures (Ability to Participate in Social Roles and Activities [ABL]; Satisfaction with Social Roles and Activities [SATIS]; Cognitive Function [COG]; Depression [DEP]; Anxiety [ANX]; Lower Extremity Function - Mobility [LE] & Upper Extremity Function - Fine Motor [UE]). Scores are T-scores with mean 50(±10). Associations were determined using Spearman correlations or paired t-tests as appropriate. Results: Participants (N=35) were 48.6(±12.5) years, 4.7(±3.6) years post aSAH, 80% female, 65.7% African American, and mean Hunt Hess Grade 2.3(±0.8). Age, race, and gender were not associated with Neuro-QoL outcomes. Our average sample T-scores were: ABL=45.3; SATIS=47.6; COG=44.3; DEP=49.3; ANX=51.3; LE=46.5; UE=46.7. COG was associated with ABL and SATIS ( p <0.02). ANX was associated with ABL ( p =0.02). UE and LE were associated with ABL (r=0.5, p =0.001; r=0.8, p <0.0001, respectively) and SATIS (r=0.5, p =0.005; r=0.8, p <0.0001). Conclusions: The Neuro-QoL measures provide an effective tool for nursing assessment of QoL in post-aSAH. Although physical disability impairs social integration, we also found that cognitive and anxiety symptoms uniquely influenced the ability to integrate into social roles and may reduce overall QoL.

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Assessing quality of life of nursing home residents with dementia: feasibility and limitations in patients with severe cognitive impairment

International Psychogeriatrics ◽

10.1017/s1041610213000823 ◽

2013 ◽

Vol 25 (10) ◽

pp. 1687-1695 ◽

Cited By ~ 14

Author(s):

María Crespo ◽

Carlos Hornillos ◽

M. Mar Gómez

Keyword(s):

Quality Of Life ◽

Cognitive Impairment ◽

Long Term Care ◽

Self Report ◽

Close Relative ◽

Term Care ◽

Severe Cognitive Impairment ◽

People With Dementia

ABSTRACTBackground:The Quality of Life-Alzheimer's Disease Scale (QOL-AD) is a reliable and valid self-report measure for assessing quality of life (QoL) in people with dementia in long-term care settings, but little is known yet about the number of patients with severe cognitive impairment who are able to complete this measure, and the characteristics of those unable to do so. The aim of the study is to advance knowledge of these issues.Methods:Data on residents with dementia were collected from 11 nursing homes. The QOL-AD residential version was directly applied to residents with dementia diagnosis and Mini-Mental State Examination scores under 27, randomly selected in each center. Residents’ QoL was further assessed from the perspective of some close relative and some staff member. Altogether, 102 data sets from residents, 184 from relatives, and 197 from staff members were collected. An analysis of the characteristics of completers versus non-completers regarding levels of cognitive impairment was carried out.Results:People with dementia in long-term care are able to report their QoL. The QOL-AD completion rate decreases as the cognitive impairment level increases; non-completion is associated with greater overall impairment. About 30% of residents with severe cognitive impairment could self-report on their QoL with acceptable reliability.Conclusions:QoL self-rating should be the first-line option when assessing residents with severe cognitive impairment. For those that are not able to complete self-report measures, proxies’ report could be an alternative, although the development of other assessment procedures (e.g. observational) should be considered.

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