scholarly journals Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
R. Shah ◽  
F. M. Ali ◽  
A. Y. Finlay ◽  
M. S. Salek
Keyword(s):  
Quality Of Life ◽  
Family Members ◽  
Unmet Need ◽  
Reliability And Validity ◽  
Chronic Health Condition ◽  
Family Quality Of Life ◽  
Good Reliability ◽  
Huge Impact ◽  
The Impact

Abstract Background A person’s chronic health condition or disability can have a huge impact on the quality of life (QoL) of the whole family, but this important impact is often ignored. This literature review aims to understand the impact of patients' disease on family members across all medical specialities, and appraise existing generic and disease-specific family quality of life (QoL) measures. Methods The databases Medline, EMBASE, CINHAL, ASSIA, PsycINFO and Scopus were searched for original articles in English measuring the impact of health conditions on patients' family members/partner using a valid instrument. Results Of 114 articles screened, 86 met the inclusion criteria. They explored the impact of a relative's disease on 14,661 family members, mostly 'parents' or 'mothers', using 50 different instruments across 18 specialities including neurology, oncology and dermatology, in 33 countries including the USA, China and Australia. These studies revealed a huge impact of patients' illness on family members. An appraisal of family QoL instruments identified 48 instruments, 42 disease/speciality specific and six generic measures. Five of the six generics are aimed at carers of children, people with disability or restricted to chronic disease. The only generic instrument that measures the impact of any condition on family members across all specialities is the Family Reported Outcome Measure (FROM-16). Although most instruments demonstrated good reliability and validity, only 11 reported responsiveness and only one reported the minimal clinically important difference. Conclusions Family members' QoL is greatly impacted by a relative's condition. To support family members, there is a need for a generic tool that offers flexibility and brevity for use in clinical settings across all areas of medicine. FROM-16 could be the tool of choice, provided its robustness is demonstrated with further validation of its psychometric properties.

scholarly journals A systematic review of olfactory related questionnaires and scales

2020 ◽  
Vol 0 (0) ◽  
pp. 0-0
Author(s):  
P. Han ◽  
T. Su ◽  
M. Qin ◽  
H. Chen ◽  
T. Hummel
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Clinical Medicine ◽  
Reliability And Validity ◽  
Clinical Intervention ◽  
Olfactory Dysfunction ◽  
Good Reliability ◽  
Research Areas ◽  
The Impact

PURPOSE: Although neglected by science for a long time, the sense of olfaction has received increasing attention from research areas including psychology, neuroscience, clinical medicine and nutrition. With the rise of psychophysical and neuroimaging re- search into olfaction, psychometric tools (e.g. questionnaires and scales) are the basis for the quantitative exploration of inter-in- dividual variability regarding olfactory related responses. The current systematic review is to summarize existing olfaction related questionnaires and/or scales. METHODS: Peer-reviewed literature on scales and questionnaires related to perception of odors were searched from online databa- ses (PubMed, Web of Science and PsycINFO). Twenty-one articles that meet the following criteria were included in the review: “hu- man species”, “no physical odor stimuli” and “describing the original development of the tool”, and “with specific focus on olfaction or odor related responses or behaviors”. The psychometric properties, advantages and possible disadvantages were discussed. RESULTS: Existing psychometric measures focus on various aspects of olfactory related responses and behaviors, including af- fective experiences of odor perception, awareness and attitude towards olfaction, olfactory function and the quality of life change due to olfactory dysfunction, and the ability to create vivid mental odor images. While most of them have been tested to have good reliability and validity, some were relatively time-consuming due to the number of questionnaire items. Besides, although many measures have been used in clinical populations, few have provided information on the predictive validity regarding effecti- veness of clinical intervention on changes of certain responses or behaviors. SUMMARY: The current review provides an overview of olfactory related questionnaires and scales, highlighting the emotional and affective impact of olfaction and the impact on quality of life due to olfactory dysfunction. With growing interest in olfaction as an important sense, the development and use of psychometrically sound measurements in conjunction with objective assess- ments will advance our understanding of human olfaction and olfactory dysfunction. The review provides a guide for researchers and clinicians alike to select olfactory scales suitable for olfactory research with different experimental purposes and specific samples.

scholarly journals Parental Stress and Family Quality of Life: Surveying Family Members of Persons with Intellectual Disabilities

2020 ◽  
Vol 17 (23) ◽  
pp. 9007
Author(s):  
Cristina Jenaro ◽  
Noelia Flores ◽  
Belén Gutiérrez-Bermejo ◽  
Vanessa Vega ◽  
Carmen Pérez ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Parenting Stress ◽  
Parental Stress ◽  
Family Members ◽  
Family Quality Of Life ◽  
Quality Of Life Scale ◽  
The Family ◽  
The Impact

(1) Background. This study assesses the quality of life in families with a member with an intellectual disability using the Family Adjustment and Adaptation Response framework. (2) Methods. The study included 515 Spanish participants whose family members with disabilities range in age from infancy to adulthood. We hypothesized that it is possible to predict parenting stress by paying attention to the meaning families give to themselves and their circumstances while controlling for the impact of other variables such as family capabilities and characteristics of the family member with disabilities. We used the Beach Center Family Quality of Life Scale and the section on Exceptional needs of medical and behavioral support from the Supports Intensity Scale, together with other potential predictors. The subscale on parental stress from the Parenting Stress Index–Short Form was utilized as a criterion measure. (3) Results. Hierarchical multiple regression analysis revealed that 49% of parental stress was predicted by dysfunctional interaction, difficult behaviors, low emotional wellbeing, poor family interaction, as well as kinship as parents, and the severity of both the medical needs and intellectual disability. (4) Conclusions. The stress experienced by those families is mostly predicted by the meaning they give to themselves and their circumstances. Implications of these findings for service delivery are discussed.

scholarly journals 416 - Family quality of life in Neurodegenerative Diseases and associated factors

2021 ◽  
Vol 33 (S1) ◽  
pp. 39-39
Author(s):  
Eva González ◽  
Alba Aza ◽  
Isabel Vicario-Molina ◽  
María Gómez-Vela ◽  
Mª Begoña Orgaz ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Neurodegenerative Diseases ◽  
Rural Areas ◽  
Family Members ◽  
Explanatory Models ◽  
Border Region ◽  
Family Quality Of Life ◽  
The Family ◽  
The Impact

Introduction:Neurodegenerative diseases (NDs) are one of the major causes of dependency among older people. Since family members assume most of the care, the impact of NDs goes beyond the patient and affects the functioning of the entire family. Nonetheless, the concept of Family Quality of Life (FQOL) is still insufficiently developed in this field: the literature has focused on family caregivers from an individual perspective, paying less attention to the family unit. Hence, the objectives were to describe FQOL of people with NDs and to identify factors associated, from a holistic point of view.Method:The sample consisted of 300 family members of patients with NDs (70% females; mean age: 62.4) living in the cross-border region of Spain-Portugal, mostly in rural areas. The majority were primary caregivers. They completed the FQOLS–ND via telephone. This survey examined how the family perceived its FQOL at the global and domain-level, in terms of attainment and satisfaction (measured on a 5-point Likert scale). It also collected data on diverse respondents’ and family characteristics.Results:The average score in Global FQOL was 3.65 (SD = 0.70) for attainment and 3.69 (SD = 0.47) for satisfaction. By domains, the highest value was found in Family Relations and the lowest in Support from services. Twenty hierarchical multiple regressions examined the potential predictors of Global FQOL and the nine domains for attainment and satisfaction. Medium predictive values (from R2=.14 to R2=.20) were found in Financial wellbeing (satisfaction), Support from services, and Leisure. The number of perceived barriers to social-health services was a significant predictor in all the explanatory models (the most frequently cited being: long wait for service, services not available, problems with transportation, lack of information, and financial costs).Conclusions:These results confirm that NDs are especially challenging in rural areas, where families feel more isolated and have fewer opportunities to receive professional support. Therefore, there is a need to design of a specific portfolio of services, resources and benefits that involves the key sectors of family welfare (public, private, third sector and family) and brings them closer to these areas, covering all the needs.

Colorectal cancer survivors’ quality of life: a qualitative study of unmet need

2020 ◽  
pp. bmjspcare-2020-002190
Author(s):  
Amanda Drury ◽  
Sheila Payne ◽  
Anne-Marie Brady
Keyword(s):  
Quality Of Life ◽  
Colorectal Cancer ◽  
Supportive Care ◽  
Cancer Survivors ◽  
Unmet Needs ◽  
Unmet Need ◽  
Safety Net ◽  
The Impact

ObjectiveCancer survivors’ perceptions of healthcare have been identified as a predictor of quality of life (QoL) outcomes. This study aims to explore colorectal cancer (CRC) survivors’ perceptions of how cancer-related healthcare affects their QoL.MethodsSemistructured interviews were conducted with 22 CRC survivors receiving follow-up care between 1 and 5 years post diagnosis. Interviews were recorded, transcribed and analysed thematically.ResultsFive themes described the impact of healthcare experiences on CRC survivors’ QoL. While cancer survivors spoke positively of their relationships with healthcare professionals, many experienced a range of unmet information and supportive care needs. Participants described a range of positive and negative experiences, as power dynamics and navigation of healthcare systems had implications for their QoL. Where negative healthcare events aligned, survivors’ autonomy, dignity and confidence were undermined, and survivorship issues could be inadequately addressed. To address persistent unmet needs, survivors developed a safety net(work) of supports to bridge the gap of unmet needs in healthcare with varying outcomes.ConclusionsCancer survivors’ experience of follow-up and healthcare can positively or negatively affect their QoL. Preparation for cancer survivorship must be incorporated into the acute phase of diagnosis and treatment and interlinked with clear pathways of survivorship care and accessible supportive care, which support survivors to be equal partners in their healthcare. Understanding cancer survivors’ knowledge, expertise and mastery of their condition is essential to ensure delivery of person-centred supportive care that adequately addresses the survivor’s unmet needs.

scholarly journals Psychometrics and Validity of the Survey of Memory-Related Quality of Life in HIV Disease

2019 ◽  
Author(s):  
Kelli L Sullivan ◽  
Paulina A Kulesz ◽  
Steven Paul Woods
Keyword(s):  
Quality Of Life ◽  
Reliability And Validity ◽  
Self Report ◽  
Memory Problems ◽  
Incremental Value ◽  
Related Quality ◽  
And Performance ◽  
Future Work ◽  
The Impact

Abstract Objective Retrospective and prospective memory deficits are associated with lower quality of life (QoL); however, there are no validated measures that comprehensively and directly assess the impact of memory problems on QoL. The Survey of Memory-Related Quality of Life (SMRQoL) was developed as a 30-item questionnaire to measure memory-related QoL. Method Both HIV+ (n = 195) and HIV− (n = 146) participants completed the SMRQoL, a neurocognitive research battery, and validated self-report questionnaires of memory, QoL, and mood. Participants were recruited into younger (age ≤ 40 years) and older (age ≥ 50 years) groups per the parent study design. Results The SMRQoL had a unidimensional factor structure and demonstrated measurement invariance across the HIV+ and HIV− participants. Analyses of 111 clinically stable participants (e.g., persons with no incident or remitting central nervous system disorders) who returned for a 14-month follow-up visit indicated that the SMRQoL had adequate test–retest stability. There was a significant interaction of age and HIV status on the SMRQoL, such that older HIV+ participants reported the lowest memory-related QoL. SMRQoL scores were associated with validated measures of mental and physical QoL, self-reported memory and cognitive symptoms, and performance-based memory and executive functions. Conclusions The SMRQoL shows evidence of reliability and validity as a measure of memory-related QoL that can be used to assess the impact of memory problems on everyday life, but future work is needed to demonstrate the measure’s incremental value in the context of diagnosis and treatment.

Reliability and Validity Testing of the SF-36 Questionnaire for the Evaluation of the Quality of Life of Chinese Urban Construction Workers

2009 ◽  
Vol 37 (4) ◽  
pp. 1184-1190 ◽  
Author(s):  
B Qu ◽  
HQ Guo ◽  
J Liu ◽  
Y Zhang ◽  
G Sun
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Reliability And Validity ◽  
Population Based ◽  
Construction Workers ◽  
Migrant Population ◽  
Good Reliability ◽  
Urban Construction ◽  
Sf 36

The quality of life (QOL) of the Chinese ‘floating’ migrant population is of growing concern. Urban construction workers are the main migrant population in China, but there is little published research on their QOL. The reliability and validity of the 36-Item Short Form Health Survey (SF-36) questionnaire were assessed by conducting a population-based study of migrant construction workers in Shenyang, China. Two construction sites were randomly selected from each of the five districts of Shenyang City and 1200 copies of the questionnaire were distributed to rurally-registered, non-Shenyang workers aged ≥ 16 years at these sites. A total of 1125 questionnaires were evaluated. The overall Cronbach's a coefficient of the SF-36 questionnaire was 0.821 while the respective Cronbach's α coefficient for each dimension was > 0.70. Results showed that the SF-36 questionnaire demonstrated good reliability and validity, and that it can be used to measure QOL among Chinese migrant urban construction workers.

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