Dataset Information

Quality of Life Among Informal Caregivers of Patients With Degenerative Cervical Myelopathy: Cross-Sectional Questionnaire Study.

ABSTRACT:

Background

Degenerative cervical myelopathy (DCM) is a common, chronic neurological condition that severely affects individuals by causing a range of disabling symptoms, frequently at a time around the peak of their careers. Subsequently, individuals with DCM often become dependent on informal care arrangements. The significant economic contribution of informal care and its burden on care providers are becoming increasingly recognized.

Objective

This study aimed to measure the quality of life of DCM informal caregivers and provide preliminary insight into possible contributing factors.

Methods

Carers of individuals with DCM completed a Web-based survey hosted by Myelopathy.org, an international DCM charity. Carer quality of life was assessed in the form of caregiver happiness and 7 dimensions of carer burden using the Care-Related Quality of Life (CarerQol) instrument. The relationships between patient disease severity, patient pain, and carer quality of life were investigated. Differences in carer quality of life were assessed across patient and carer demographic groups, including between UK and US carers.

Results

DCM caregivers experienced substantial burden as a result of their caregiving (mean CarerQol-7D=64.1; 95% CI 58.8-69.5) and low happiness (mean CarerQol-VAS [Visual Analog Scale]=6.3; 95% CI 5.7-6.9). Burden was high and happiness was low in DCM carers when compared with a large, mixed-disease study of adult informal carers where CarerQol-7D was 79.1 and CarerQol-VAS was 7.1. No significant relationship was found between DCM carer quality of life and patient disease severity and pain scores. DCM carer quality of life appeared uniform across all patient and carer demographic groups.

Conclusions

Caring for individuals with DCM is associated with reduced quality of life in the form of significant burden and reduced happiness. Reductions appear greater in DCM than in other diseases investigated. However, no simple relationship was identified between individual patient or carer factors and carer quality of life.

SUBMITTER: Mowforth OD

PROVIDER: S-EPMC6914271 | biostudies-literature | 2019 Nov

REPOSITORIES: biostudies-literature

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Publications

Quality of Life Among Informal Caregivers of Patients With Degenerative Cervical Myelopathy: Cross-Sectional Questionnaire Study.

Mowforth Oliver Daniel OD Davies Benjamin Marshall BM Kotter Mark Reinhard MR

Interactive journal of medical research 20191107 4

<h4>Background</h4>Degenerative cervical myelopathy (DCM) is a common, chronic neurological condition that severely affects individuals by causing a range of disabling symptoms, frequently at a time around the peak of their careers. Subsequently, individuals with DCM often become dependent on informal care arrangements. The significant economic contribution of informal care and its burden on care providers are becoming increasingly recognized.<h4>Objective</h4>This study aimed to measure the qua ...[more]

PMID: 31697240

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Project description:ObjectivesTo establish the recovery priorities of individuals suffering with degenerative cervical myelopathy (DCM).DesignA cross-sectional, observational study.SettingPatients from across the world with a diagnosis of DCM accessed the survey over an 18-month period on Myelopathy.org, an international myelopathy charity.Participants481 individuals suffering from DCM completed the online survey fully.Main outcome measuresFunctional recovery domains were established through qualitative interviews and a consensus process. Individuals were asked about their disease characteristics, including limb pain (Visual Analogue Scale) and functional disability (patient-derived version of the modified Japanese Orthopaedic Association score). Individuals ranked recovery domains (arm and hand function, walking, upper body/trunk function, sexual function, elimination of pain, sensation and bladder/bowel function) in order of priority. Priorities were analysed as the modal first priority and mean ranking. The influence of demographics on selection was analysed, with significance p<0.05.ResultsOf 659 survey responses obtained, 481 were complete. Overall, pain was the most popular recovery priority (39.9%) of respondents, followed by walking (20.2%), sensation (11.9%) and arm and hand function (11.5%). Sexual function (5.7%), bladder and bowel (3.7%) and trunk function (3.5%) were chosen less frequently. When considering the average ranking of symptoms, while pain remained the priority (2.6±2.0), this was closely followed by walking (2.9±1.7) and arm/hand function (3.0±1.4). Sensation ranked lower (4.3±2.1). With respect to disease characteristics, overall pain remained the recovery priority, with the exception of patients with greater walking impairment (p<0.005) who prioritised walking, even among patients with lower pain scores.ConclusionsThis is the first study investigating patient priorities in DCM. The patient priorities reported provide an important framework for future research and will help to ensure that it is aligned with patient needs.

Project description:Previous studies aimed at identifying predictors of clinical outcomes following surgical decompression for degenerative cervical myelopathy (DCM) are limited by multicollinearity among predictors, whereby the high degree of correlation between covariates precludes detection of potentially significant findings. We apply partial least squares (PLS), a data-driven approach, to model multi-dimensional variance and dissociate patient phenotypes associated with functional, disability, and quality of life (QOL) outcomes in DCM. This was a post-hoc analysis of DCM patients enrolled in the prospective, multi-center AOSpine CSM-NA/CSM-I studies. Baseline clinical covariates evaluated as predictors included demographic (e.g., age, sex), clinical presentation (e.g., signs and symptoms), and treatment (e.g., surgical approach) characteristics. Outcomes evaluated included change in functional status (∆mJOA), disability (∆NDI), and QOL (∆SF-36) at 2 years. PLS was used to derive latent variables (LVs) relating specific clinical covariates with specific outcomes. Statistical significance was estimated using bootstrapping. Four hundred and seventy-eight patients met eligibility criteria. PLS identified 3 significant LVs. LV1 indicated an association between presentation with hand muscle atrophy, treatment by an approach other than laminectomy alone, and greater improvement in physical health-related QOL outcomes (e.g., SF-36 Physical Component Summary). LV2 suggested the presence of comorbidities (respiratory, rheumatologic, psychological) was associated with lesser improvements in functional status post-operatively (i.e., mJOA score). Finally, LV3 reflected an association between more severe myelopathy presenting with gait impairment and poorer mental health-related QOL outcomes (e.g., SF-36 Mental Component Summary). Using PLS, this analysis uncovered several novel insights pertaining to patients undergoing surgical decompression for DCM that warrant further investigation: (1) comorbid status and frailty heavily impact functional outcome; (2) presentation with hand muscle atrophy is associated with better physical QOL outcomes; and (3) more severe myelopathy with gait impairment is associated with poorer mental QOL outcomes.

Project description:To assess the quality of life (QoL) of caregivers of children with sickle cell disease (SCD) and to determine the risk factors associated with poor QoL.A cross sectional study was conducted between 01 and 30 June 2015, in a tertiary care center in western Saudi Arabia to assess various dimensions of QoL by using TNO-AZL Questionnaire for Adult's Health-related Quality of Life (TAAQOL). A total 164 adult caregivers (aged 16 years or more) of children with SCD, who were regularly visiting the department were enrolled (refusal rate?=?61.6%). The questionnaire scores were transformed into 0-100 scale; with higher scores indicating less difficulty and better QoL Demographic, socioeconomic data and a satisfaction questionnaire regarding participants' lifestyle were collected and analyzed as risk factors for impaired QoL, by comparing different QoL dimensions' scores using independent t-test, Oneway ANOVA, or linear regression, as appropriate.Sixty-three caregivers were included; 79.4% were mothers, age range 21-71 years, 64.5% were from low social class receiving insufficient support and financial needs were unmet for considerable number of families. Analysis of QoL using TAAQOL showed that emotions (median [75th centile]?=?44.44 [66.67] for negative and 61.11 [72.22] for positive emotions), sleep quality (66.67 [91.67]) and sexual life (50.00 [83.33]) were the most affected dimensions. Professional achievement (91.67 [100]), cognitive skills (83.33 [100]), and social contact (100 [100]) were relatively preserved. Negative emotions were more marked in mothers and mostly predicted by satisfaction with social relations notably with partner (B?=?3.14, p?=?0.016), friends (B?=?2.51, p?=?0.015) and relatives (B?=?2.69, p?=?0.016). Positive emotions were predicted by the levels of satisfaction of the caregiver with his/her health (B?=?2.56, p?=?0.001), job achievement (B?=?4.54, p?=?0.001), living conditions (B?=?2.60, p?=?0.034) and the condition of the diseased child (B?=?2.55, p?=?0.011). A strong correlation was found between sleep quality and cognitive skills.There are notable financial and emotional burdens on the caregivers of children with SCD affecting various aspects of their QoL, which are likely to be impacted by the individual levels of social and professional achievement. Physicians and health authorities should give particular attention to the QoL of caregivers and families of children with SCD, to help them cope up with the disease and overcome its related psychological and financial impacts.

Project description:BackgroundDegenerative cervical myelopathy (DCM) is widely accepted as the most common cause of adult myelopathy worldwide. Despite this, there is no specific term or diagnostic criteria in the International Classification of Diseases 11th Revision and no Medical Subject Headings (MeSH) or an equivalent in common literature databases. This makes searching the literature and thus conducting systematic reviews or meta-analyses imprecise and inefficient. Efficient research synthesis is integral to delivering evidence-based medicine and improving research efficiency.ObjectiveThis study aimed to illustrate the difficulties encountered when attempting to carry out a comprehensive and accurate evidence search in the field of DCM by identifying the key sources of imprecision and quantifying their impact.MethodsTo identify the key sources of imprecision and quantify their impact, an illustrative search strategy was developed using a validated DCM hedge combined with contemporary strategies used by authors in previous systematic reviews and meta-analyses. This strategy was applied to Medical Literature Analysis and Retrieval System Online (MEDLINE) and Excerpta Medica dataBASE (EMBASE) databases looking for relevant DCM systematic reviews and meta-analyses published within the last 5 years.ResultsThe MEDLINE via PubMed search strategy returned 24,166 results, refined to 534 papers after the application of inclusion and exclusion criteria. Of these, 32.96% (176/534) results were about DCM, and 18.16% (97/534) of these were DCM systematic reviews or meta-analyses. Non-DCM results were organized into imprecision categories (spinal: 268/534, 50.2%; nonspinal: 84/534, 15.5%; and nonhuman: 8/534, 1.5%). The largest categories were spinal cord injury (75/534, 13.67%), spinal neoplasms (44/534, 8.24%), infectious diseases of the spine and central nervous system (18/534, 3.37%), and other spinal levels (ie, thoracic, lumbar, and sacral; 18/534, 3.37%). Counterintuitively, the use of human and adult PubMed filters was found to exclude a large number of relevant articles. Searching a second database (EMBASE) added an extra 12 DCM systematic reviews or meta-analyses.ConclusionsDCM search strategies face significant imprecision, principally because of overlapping and heterogenous search terms, and inaccurate article indexing. Notably, commonly employed MEDLINE filters, human and adult, reduced search sensitivity, whereas the related articles function and the use of a second database (EMBASE) improved it. Development of a MeSH labeling and a standardized DCM definition would allow comprehensive and specific indexing of DCM literature. This is required to support a more efficient research synthesis.

Project description:BackgroundCaregiving responsibility can change caregivers' lives; modify their emotions; and make them feel frustrated, fearful, and nervous, thereby imposing physical and mental stress. Caregiving-related mobile apps provide a platform for obtaining valuable and trusted information, connecting more easily with other caregivers, monitoring medications, and managing appointments, and assessing health requirements and conditions of care receivers. Such apps also incorporate valuable resources that address care for the caregivers. Despite the potential benefits of caregiving-related apps, only a limited number of caregivers have adopted and used them.ObjectiveThe aim of this study is to explore the important factors that affect caregivers' intentions to integrate related mobile apps into their routine caregiving responsibilities.MethodsUsing the protection motivation theory, we conducted a cross-sectional study among 249 participants. Purposive sampling was used to target participants who met 4 inclusion criteria: US residents, owning and using a smartphone, informal caregivers (individuals who give care to a friend or family member without payment) who provided at least 8 hours of care per week in the past year, and those currently not using any mobile app for caregiving purposes. We created a survey using Qualtrics and posted it on Amazon's Mechanical Turk website. Participants received monetary compensation after successful completion of the survey.ResultsWe found that capabilities and skills of caregivers to use mobile apps, the app's effectiveness in responding to the needs of caregivers, the degree of control of caregivers over their responsibilities, and the decisions they make for their care receivers can predict their willingness to adopt caregiving-related apps. In addition, the severity of health status and vulnerability of care receivers to unexpected health changes indirectly shape their caregivers' decisions to adopt and use mobile apps for caregiving purposes.ConclusionsThis study explores the important factors that affect informal caregivers' intentions to adopt related mobile apps into their routine caregiving responsibilities. The results contribute to both mobile health adoption and the caregiving literature, and they offer significant implications for developers, health care practitioners, and policy makers.

Dataset Information

Quality of Life Among Informal Caregivers of Patients With Degenerative Cervical Myelopathy: Cross-Sectional Questionnaire Study.

Background

Objective

Methods

Results

Conclusions

Publications

Quality of Life Among Informal Caregivers of Patients With Degenerative Cervical Myelopathy: Cross-Sectional Questionnaire Study.

Similar Datasets

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