An International Study of Caregiver-Reported Burden and Quality of Life in Metachromatic Leukodystrophy
Leukodystrophy Metachromatic/Genetics; Quality of Life/Psychology; Burden of illness; Caregiver burden; Caregiver experience; Caregivers; Child; Early-onset; Family; Humans; Juvenile; Late infantile; Metachromatic leukodystrophy; Mld; Quality of Life; Surveys and Questionnaires
BACKGROUND: Metachromatic leukodystrophy (MLD) is an autosomal recessive lysosomal disorder caused by mutations in the arylsulfatase A gene. Until now, there has been little information on the burden of MLD on patients and their caregivers. This multinational study aims to quantify caregiver-related impacts of MLD across several key domains including symptoms, treatment burden, time investment, social and emotional well-being, and professional and financial impact. RESULTS: Data were collected through moderator-assisted web survey and telephone interviews. The survey was developed with extensive input from clinical experts and MLD patient advocacy groups. The EQ-5D-5L questionnaire was administered during follow-up interviews. The total sample consisted of parents of MLD patients in the US (n = 10), France (n = 10), Germany (n = 6), UK (n = 5), Belgium (n = 1), and Norway (n = 2). The impact of MLD is evident from the EQ-5D-5L scores, which indicate utility values for caregivers below respective national population norms and a higher proportion of caregivers reporting problems with anxiety/depression. Time involved for care was demonstrated by a mean of 4.1 inpatient and 29.6 outpatient hospital visits in the previous 12-month period. These commitments place stress on familial relationships with 50% of caregivers reporting their child's MLD diagnosis had negatively impacted their relationship with their spouse/partner. Professionally, 76.5% of caregivers stopped working or switched to part-time employment following their child's MLD diagnosis, and most acknowledged caring for their child had affected their potential for career progression or promotion. Differences are also observed based on late infantile versus juvenile onset MLD, time since diagnosis, and for transplanted patients versus those who received palliative care only. CONCLUSIONS: This multinational study demonstrates that MLD consistently negatively affects many aspects of caregivers' lives including health, relationships, and professional status, irrespective of location. We expect that the results of this study are generalizable to other countries. This study enhances our understanding of MLD caregiver impacts, which could improve patient care and assist in identifying support for individuals with MLD and their families.
Sevin C; Barth M; Wilds A; Afriyie A; Walz M; Dillon A; Howie K; Pang F
Orphanet Journal of Rare Diseases
2022
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<a href="http://doi.org/10.1186/s13023-022-02501-8" target="_blank" rel="noreferrer noopener">10.1186/s13023-022-02501-8</a>
Use of subcutaneous fluids in palliative care with children: a case study
artificial hydration; child health; clinical; end of life care; ethical issues; fluid management; hospices; Humans; hydration; Hypodermoclysis/methods/standards; nutrition; palliative care; Palliative Care/methods/standards; parents; Patient Comfort/standards; Pediatrics/instrumentation/methods; professional; Quality of Life/psychology; terminal care
Quality of life is a major consideration in children's palliative care, particularly at the end of life. Optimal symptom management is crucial in maintaining quality of life, with the aim being to ensure the child is as comfortable as possible. Ensuring adequate hydration will often be part of symptom management but may be associated with several practical and ethical challenges. Subcutaneous fluid administration in children's palliative care is relatively uncommon, so there is a lack of evidence on the topic. This article demonstrates that it is feasible to use subcutaneous fluid therapy in the children's hospice setting to address patients' hydration needs and manage their symptoms. It presents a case study of a child who received subcutaneous fluids in a children's hospice for dehydration and myoclonus. It uses the case study to discuss subcutaneous fluid therapy in the children's palliative care setting, including its indications and contraindications, administration, complications and important factors to consider.
Smith A; Brimble MJ
Nursing Children and Young People
2020
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<a href="http://doi.org/10.7748/ncyp.2020.e1277" target="_blank" rel="noreferrer noopener">10.7748/ncyp.2020.e1277</a>
Child and adolescent self-report symptom measurement in pediatric oncology research: a systematic literature review
Cross-Sectional Studies; Young Adult; Child; Humans; Adult; Adolescent; Reproducibility of Results; Biomedical Research; Quality of Life/psychology; Psychometrics; Adverse event self-report; Pediatric oncology; Self Report; Self-report instruments; Medical Oncology/standards
OBJECTIVE: Previous work in pediatric oncology has found that clinicians and parents tend to under-report the frequency and severity of treatment-related symptoms compared to child self-report. As such, there is a need to identify high-quality self-report instruments to be used in pediatric oncology research studies. This study's objective was to conduct a systematic literature review of existing English language instruments used to measure self-reported symptoms in children and adolescents undergoing cancer treatment. METHODS: A comprehensive literature search was conducted in MEDLINE/PubMed, EMBASE, CINAHL, and PsycINFO to identify relevant articles published through November 10, 2016. Using pre-specified inclusion/exclusion criteria, six trained reviewers carefully screened abstracts and full-text articles for eligibility. RESULTS: There were 7738 non-duplicate articles identified in the literature search. Forty articles met our eligibility criteria, and within these articles, there were 38 self-report English symptom instruments. Most studies evaluated only cross-sectional psychometric properties, such as reliability or validity. Ten studies assessed an instrument's responsiveness or ability to detect changes in symptoms over time. Eight instruments met our criteria for use in future longitudinal pediatric oncology studies. CONCLUSIONS: This systematic review aids pediatric oncology researchers in identifying and selecting appropriate symptom measures with strong psychometric evidence for their studies. Enhancing the child's voice in pediatric oncology research studies allows us to better understand the impact of cancer and its treatment on the lives of children.
Pinheiro LC; McFatrich M; Lucas N; Walker JS; Withycombe JS; Hinds PS; Sung L; Tomlinson D; Freyer DR; Mack JW; Baker JN; Reeve BB
Quality of Life Research
2018
<a href="http://doi.org/%2010.1007/s11136-017-1692-4" target="_blank" rel="noreferrer noopener">10.1007/s11136-017-1692-4</a>
Long term posttraumatic growth after breast cancer: prevalence, predictors and relationships with psychological health
Cross-Sectional Studies; Female; Humans; Adult; Prevalence; Attitude to Health; Follow-Up Studies; Aged; Middle Aged; Predictive Value of Tests; Adaptation; Psychological; retrospective studies; Post-Traumatic/diagnosis/epidemiology/psychology; Stress Disorders; Disease-Free Survival; Breast Neoplasms/epidemiology/psychology; Quality of Life/psychology
This study evaluated the prevalence and predictors of long term posttraumatic growth (PTG) after breast cancer, and relationships of PTG with psychological health in a random sample of 307 currently disease-free women 5-15 years after diagnosis. This cross-sectional study reveals long term posttraumatic growth scores comparable to those found in shorter term studies. Prevalence of a better appreciation of life is especially noteworthy. With the exception of perceived current sequelae of disease associated in a somewhat curvilinear fashion with PTG, demographic and medical variables are poor predictors of the issue. On the contrary, dispositional positive affectivity and adaptative coping of positive, active, relational, religious and to some extent denial coping have a strong effect on growth. Finally, PTG is slightly associated with mental quality of life and happiness. Findings are discussed in the light of posttraumatic growth theory.
2010
Lelorain S; Bonnaud-Antignac A; Florin A
Journal Of Clinical Psychology In Medical Settings
2010
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Journal Article
<a href="http://doi.org/10.1007/s10880-009-9183-6" target="_blank" rel="noreferrer">10.1007/s10880-009-9183-6</a>
Providing care in chronic disease: the ever-changing balance of integrating palliative and restorative medicine
Humans; Professional-Family Relations; Cost of Illness; Chronic disease; social support; Palliative Care/methods; Quality of Life/psychology
Caring for children who have a chronic life-limiting illness can be emotionally and physically challenging. Just as families may struggle with whether they are making the right decisions, care providers struggle with whether they are giving the right advice, predicting the medical course correctly, and making the correct medical decisions. Uncertainty is a constant for the family and the care provider. The willingness of the care provider to develop a relationship with the family that involves continuing communication and re-evaluation of the child's condition and the family's perspective can relieve some of the emotional and physical suffering associated with a chronic disease and support the family in times of hope and grief.
2007
Klick JC; Ballantine A
Pediatric Clinics Of North America
2007
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Journal Article
<a href="http://doi.org/10.1016/j.pcl.2007.07.003" target="_blank" rel="noreferrer">10.1016/j.pcl.2007.07.003</a>
Self-portraits of families with young adult cancer survivors: using photovoice
Female; Humans; Male; Young Adult; Questionnaires; Self Concept; Socioeconomic Factors; Semantics; Psychology; adolescent; Family/psychology; Survivors/psychology; Quality of Life/psychology; Voice; Narration; Neoplasms/ethnology/psychology; Photography; Ethnic Groups/statistics & numerical data
Photovoice is a participatory research methodology in which individuals photograph their everyday realities. The present study used photovoice to understand the impact of cancer on a sample of six young adult survivors of childhood cancer (YACS) and their family members. The themes of the YACS group included, in their own words, "lost childhood," "my culture," "health," "what keeps me going/sacrifices," and "who am I?" Those of the family group included "how cancer affected survivors' hopes and dreams?," "positive impact of cancer," "importance of information," "barriers to self-care," and "what we learned and what we can do." The family-based and participants-driven framework and photovoice produced some novel findings that call for YACS-targeted guidance and training on social relationships, independence, and career; support for the families from family-oriented cultures; and facilitation of family dialogue.
2010
Yi J; Zebrack B
Journal Of Psychosocial Oncology
2010
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Journal Article
<a href="http://doi.org/10.1080/07347331003678329" target="_blank" rel="noreferrer">10.1080/07347331003678329</a>
Impact of an inpatient palliative care team: a randomized control trial.
Humans; Survival Rate; Prospective Studies; Aged; Cooperative Behavior; Patient Satisfaction; DNAR; DNAR Outcomes; Quality of Life/psychology; Critical Illness/psychology; patient care team; Hospice Care/utilization; Hospitalization; Palliative Care/mt [Methods]; patient care team; Advance Directives/sn [Statistics & Numerical Data]; Advance Directives/statistics & numerical data; Critical Illness/ep [Epidemiology]; Critical Illness/epidemiology; Critical Illness/px [Psychology]; Critical Illness/rehabilitation; Critical Illness/rh [Rehabilitation]; Hospice Care/ut [Utilization]; Hospitalization/statistics & numerical data; Hospitalization/statistics & numerical data; Palliative Care/methods; Quality of Life/px [Psychology]
BACKGROUND: Palliative care improves care and reduces costs for hospitalized patients with life-limiting illnesses. There have been no multicenter randomized trials examining impact on patient satisfaction, clinical outcomes, and subsequent health care costs., OBJECTIVE: Measure the impact of an interdisciplinary palliative care service (IPCS) on patient satisfaction, clinical outcomes, and cost of care for 6 months posthospital discharge., METHODS: Multicenter, randomized, controlled trial. IPCS provided consultative, interdisciplinary, palliative care to intervention patients. Controls received usual hospital care (UC)., SETTING AND SAMPLE: Five hundred seventeen patients with life-limiting illnesses from a hospital in Denver, Portland, and San Francisco enrolled June 2002 to December 2003., MEASURES: Modified City of Hope Patient Questionnaire, total health care costs, hospice utilization, and survival., RESULTS: IPCS reported higher scores for the Care Experience scale (IPCS: 6.9 versus UC: 6.6, p = 0.04) and for the Doctors, Nurses/Other Care Providers Communication scale (IPCS: 8.3 versus UC: 7.5, p = 0.0004). IPCS patients had fewer intensive care admissions (ICU) on hospital readmission (12 versus 21, p = 0.04), and lower 6-month net cost savings of $4,855 per patient (p = 0.001). IPCS had longer median hospice stays (24 days versus 12 days, p = 0.04). There were no differences in survival or symptom control., CONCLUSIONS: IPCS patients reported greater satisfaction with their care experience and providers' communication, had fewer ICU admissions on readmission, and lower total health care costs following hospital discharge.
2008
Gade G; Venohr I; Conner D; McGrady K; Beane J; Richardson RH; Williams MP; Liberson M; Blum M; Della PR
Journal Of Palliative Medicine
2008
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Journal Article
<a href="http://doi.org/10.1089/jpm.2007.0055" target="_blank" rel="noreferrer">10.1089/jpm.2007.0055</a>
Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales
Child; Female; Humans; Male; Age Factors; Severity of Illness Index; Longitudinal Studies; Self Disclosure; Proxy; Case-Control Studies; World Health; Sickness Impact Profile; adolescent; Preschool; Quality of Life/psychology; Cluster Analysis; Psychometrics/instrumentation; Disabled Children/psychology; Chronic Disease/classification/epidemiology/psychology; Pediatrics/instrumentation
BACKGROUND: Advances in biomedical science and technology have resulted in dramatic improvements in the healthcare of pediatric chronic conditions. With enhanced survival, health-related quality of life (HRQOL) issues have become more salient. The objectives of this study were to compare generic HRQOL across ten chronic disease clusters and 33 disease categories/severities from the perspectives of patients and parents. Comparisons were also benchmarked with healthy children data. METHODS: The analyses were based on over 2,500 pediatric patients from 10 physician-diagnosed disease clusters and 33 disease categories/severities and over 9,500 healthy children utilizing the PedsQL 4.0 Generic Core Scales. Patients were recruited from general pediatric clinics, subspecialty clinics, and hospitals. RESULTS: Pediatric patients with diabetes, gastrointestinal conditions, cardiac conditions, asthma, obesity, end stage renal disease, psychiatric disorders, cancer, rheumatologic conditions, and cerebral palsy self-reported progressively more impaired overall HRQOL than healthy children, respectively, with medium to large effect sizes. Patients with cerebral palsy self-reported the most impaired HRQOL, while patients with diabetes self-reported the best HRQOL. Parent proxy-reports generally paralleled patient self-report, with several notable differences. CONCLUSION: The results demonstrate differential effects of pediatric chronic conditions on patient HRQOL across diseases clusters, categories, and severities utilizing the PedsQL 4.0 Generic Core Scales from the perspectives of pediatric patients and parents. The data contained within this study represents a larger and more diverse population of pediatric patients with chronic conditions than previously reported in the extant literature. The findings contribute important information on the differential effects of pediatric chronic conditions on generic HRQOL from the perspectives of children and parents utilizing the PedsQL 4.0 Generic Core Scales. These findings with the PedsQL have clinical implications for the healthcare services provided for children with chronic health conditions. Given the degree of reported impairment based on PedsQL scores across different pediatric chronic conditions, the need for more efficacious targeted treatments for those pediatric patients with more severely impaired HRQOL is clearly and urgently indicated.
2007
Varni JW; Limbers CA; Burwinkle TM
Health And Quality Of Life Outcomes
2007
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Journal Article
<a href="http://doi.org/10.1186/1477-7525-5-43" target="_blank" rel="noreferrer">10.1186/1477-7525-5-43</a>
Parental decision making in pediatric cancer end-of-life care: Using focus group methodology as a prephase to seek participant design input
Child; Humans; Terminal Care; Attitude to Health; Questionnaires; Professional-Family Relations; Patient-Centered Care; Qualitative Research; Nurse's Role; Pediatric Nursing; Program Development; Needs Assessment; Patient Selection; Helping Behavior; Adaptation; Psychological; PedPal Lit; decision making; Parents/psychology; Neoplasms; social support; Quality of Life/psychology; Focus Groups/methods; Focus Groups/utilization; Morale; Nursing Methodology; Oncologic Nursing
The ultimate aim of our research program is to provide strategies that facilitate parental decision-making for parents of children with cancer receiving end-of-life care. As a first step to develop this program, we needed insight into parents' reactions and opinions about the research methods planned for a larger study. In particular, we needed their opinions about the general experience of making the decision between palliative cytotoxic chemotherapy and supportive care alone and the factors that parents regard as important when making this decision. In addition, we wished to know whether the methodology proposed for the future study was easy to understand and whether it might cause unnecessary emotional trauma. Finally, we asked their opinions regarding the appropriate target sample of parents to include in the future study. Qualitative data about these issues were collected using focus group methodology involving seven participants. The comments made during the focus group discussions were content-analyzed for common themes. The results from the focus group discussion led to particular modifications in the proposed design and interview strategies planned for the future larger study. We found it was extremely beneficial to include a focus group pre-phase in a study that will interview parents in a high sensitivity area.
2006
Tomlinson D; Capra M; Gammon J; Volpe J; Barrera M; Hinds PS; Bouffet E; Geenberg ML; Baruchel S; Llewellyn-Thomas HA; Sung L
European Journal Of Oncology Nursing
2006
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Journal Article
<a href="http://doi.org/10.1016/j.ejon.2005.11.003" target="_blank" rel="noreferrer">10.1016/j.ejon.2005.11.003</a>
A meta-analytic review of benefit finding and growth
Humans; Attitude; Health Status; Affect; Adaptation; Psychological; Parent caregivers; Stress Disorders; Quality of Life/psychology; Post-Traumatic/psychology
The authors conducted a meta-analysis to examine the relations of benefit finding to psychological and physical health as well as to a specific set of demographic, stressor, personality, and coping correlates. Results from 87 cross-sectional studies reported in 77 articles showed that benefit finding was related to less depression and more positive well-being but also more intrusive and avoidant thoughts about the stressor. Benefit finding was unrelated to anxiety, global distress, quality of life, and subjective reports of physical health. Moderator analyses showed that relations of benefit finding to outcomes were affected by the amount of time that had passed since stressor onset, the benefit finding measured used, and the racial composition of the sample.
2006
Helgeson VS; Reynolds KA; Tomich PL
Journal Of Consulting And Clinical Psychology
2006
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Journal Article
<a href="http://doi.org/10.1037/0022-006X.74.5.797" target="_blank" rel="noreferrer">10.1037/0022-006X.74.5.797</a>
Recommendations for using opioids in chronic non-cancer pain
Humans; Analgesics; Drug Administration Schedule; Psychology; Chronic disease; Biomarkers of Pain; Pain/drug therapy; Quality of Life/psychology; Opioid/therapeutic use; Patient Education
1. The management of chronic pain should be directed by the underlying cause of the pain. Whatever the cause, the primary goal of patient care should be symptom control. 2. Opioid treatment should be considered for both continuous neuropathic and nociceptive pain if other reasonable therapies fail to provide adequate analgesia within a reasonable timeframe. 3. The aim of opioid treatment is to relieve pain and improve the patient's quality of life. Both of these should be assessed during a trial period. 4. The prescribing physician should be familiar with the patient's psychosocial status. 5. The use of sustained-release opioids administered at regular intervals is recommended. 6. Treatment should be monitored. 7. A contract setting out the patient's rights and responsibilities may help to emphasize the importance of patient involvement. 8. Opioid treatment should not be considered a lifelong treatment.
2003
Kalso E; Allan L; Dellemijn PL; Faura CC; Ilias WK; Jensen TS; Perrot S; Plaghki LH; Zenz M
European Journal Of Pain
2003
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Journal Article
<a href="http://doi.org/10.1016/S1090-3801(02)00143-X" target="_blank" rel="noreferrer">10.1016/S1090-3801(02)00143-X</a>
Relationship between three palliative care outcome scales
Female; Hospitalization; Humans; Male; Adult; England; Questionnaires; Aged; Middle Aged; Socioeconomic Factors; Psychometrics; Sickness Impact Profile; 80 and over; Adaptation; Psychological; Caregivers/psychology; Family/psychology; Palliative Care/psychology; Quality of Life/psychology; home care services; Neoplasms/physiopathology/psychology/therapy; Outcome Assessment (Health Care)/methods
BACKGROUND: Various scales have been used to assess palliative outcomes. But measurement can still be problematic and core components of measures have not been identified. This study aimed to determine the relationships between, and factorial structure of, three widely used scales among advanced cancer patients. METHODS: Patients were recruited who received home or hospital palliative care services in the south of England. Hope, quality of life and palliative outcomes were assessed by patients in face to face interviews, using three previously established scales - a generic measure (EQoL), a palliative care specific measure (POS) and a measure of hope (Herth Hope Index). Analysis comprised: exploratory factor analysis of each individual scale, and all scales combined, and confirmatory factor analysis for model building and validation. RESULTS: Of 171 patients identified, 140 (81%) consented and completed first interviews; mean age was 71 years, 54% were women, 132 had cancer. In exploratory analysis of individual means, three out of the five factors in the EQoL explained 75% of its variability, four out of the 10 factors in POS explained 63% of its variability, and in the Hope Index, nine out of the 12 items explained 69% of its variability. When exploring the relative factorial structure of all three scales, five factors explained 56% of total combined variability. Confirmatory analysis reduced this to a model with four factors - self-sufficiency, positivity, symptoms and spiritual. Removal of the spiritual factor left a model with an improved goodness of fit and a measure with 11 items. CONCLUSION: We identified three factors which are important outcomes and would be simple to measure in clinical practice and research.
2004
Higginson IJ; Donaldson N
Health And Quality Of Life Outcomes
2004
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Journal Article
<a href="http://doi.org/10.1186/1477-7525-2-68" target="_blank" rel="noreferrer">10.1186/1477-7525-2-68</a>
Evolution in measuring the quality of dying
Attitude to Death; Non-U.S. Gov't; P.H.S.; U.S. Gov't; Human; Support; Quality Assurance; Non-P.H.S.; Health Care/trends; Hospice Care/psychology/standards; Process Assessment (Health Care)/methods; Quality of Life/psychology; Terminal Care/psychology/standards
PURPOSE: Despite multiple efforts to improve the experience for dying patients, researchers still struggle to identify appropriate outcome measures that assess patients' and families' experiences. If health care systems are to provide excellent, compassionate care to dying patients and their families, there must be a valid means of assessing the quality of those experiences and interventions to improve care. The purpose of this paper is to evaluate quality-of-life instruments currently used to assess the experiences of dying patients, and to offer a design for a next generation instrument to measure quality at the end of life. DESIGN: Sources were attained through a review of the quality of life, quality of dying, and end-of-life care literatures. The terms quality of life, quality of care, terminal care, hospice, assessment, and measurement were used singly and in combination in the MEDLINE database from 1966 to 2001. DISCUSSION: An appropriate clinical quality of dying instrument must be derived from the perspectives of end-of-life care participants and include the multiple domains of experience important to patients and families. Because dying patients are often too ill to communicate, nonresponse bias is a major problem in this population. Researchers must identify additional objective and subjective measures that clearly reflect, correspond well (or predictably) with, and serve as alternatives to patients' self-ratings. Additionally, an appropriate assessment tool must accommodate individual definitions of the quality of dying and demonstrate sensitivity to change over time.
2002
Steinhauser KE; Clipp EC; Tulsky JA
Journal Of Palliative Medicine
2002
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Journal Article
Methodological challenges for measuring quality of care at the end of life
Humans; Research Design; Quality of Life/psychology; Quality Assurance; Terminal Care/standards; Health Care/methods; Health Care/statistics & numerical data
Measurement is a fundamental step in improving the quality of care for dying patients and their families. Yet, there are important methodological challenges to be addressed. In conducting surveys about the patient and family experience, research is needed regarding the relative merits and cost-effectiveness of prospective or retrospective surveys after the patient’s death. Proxies are an important source of information given that the majority of patients can not be interviewed in the last week of life. Research is needed to understand who is best able to serve as a proxy and the validity of their reports. The cost-effectiveness and comparability of alternative data collection strategies need to be examined. These and other important issues need to be addressed in designing reliable, valid, and clinically manageable measures.
1999
Fowler FJ; Coppola KM; Teno JM
Journal Of Pain And Symptom Management
1999
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Journal Article
<a href="http://doi.org/10.1016/s0885-3924(98)00133-x" target="_blank" rel="noreferrer">10.1016/s0885-3924(98)00133-x</a>
The Spanish version of the dementia quality of life questionnaire: a validation study
Female; Humans; Male; Aged; Middle Aged; Severity of Illness Index; European Continental Ancestry Group; Sensitivity and Specificity; Reproducibility of Results; Spain; Diagnostic and Statistical Manual of Mental Disorders; Language; 80 and over; Quality of Life/psychology; Questionnaires/standards; Dementia/diagnosis/physiopathology/psychology; Psychometrics/instrumentation; Translations
BACKGROUND: The aim of the study was to adapt and validate culturally the dementia-specific health-related quality of life instrument (HRQoL) into Spanish for patients with mild to moderate dementia. METHODS: Two forward translations, a reconciled version, and then a back translation were completed and subjected to expert review. A total of 112 patients with dementia, diagnosed according to DSM-IV criteria, from six centres providing care for persons with dementia in Spain participated in the study. The following patient-reported information was obtained by interview: demographics, subjective perception of health, depressive symptoms (Geriatric Depression Scale-15; GDS-15), functional ability (Barthel Index), and both generic (World Health Organization Quality of Life; WHOQOL-BREF) and dementia-specific quality of life (DQoL). RESULTS: The Spanish version of the DQoL showed acceptable psychometric properties. Internal consistency (Cronbach's alpha) was acceptable for most of the DQoL scales. As expected, associations were found between DQoL scales and the WHOQOL-BREF psychological domain and the GDS-15, indicating good validity. Neither functional status nor severity of dementia was associated with QoL; but depressive symptoms and self-reported feeling ill had a negative association on QoL. CONCLUSIONS: The results showed that the Spanish version of the DQoL has comparable psychometric properties to the US version. The DQoL appears to be a reliable and valid instrument intended to be administered to patients with mild/moderate dementia who are living at home.
Lucas-Carrasco R; Gomez-Benito J; Rejas J; Brod M
Aging & Mental Health
2011
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Journal Article
<a href="http://doi.org/10.1080/13607863.2010.543658" target="_blank" rel="noreferrer">10.1080/13607863.2010.543658</a>
A Longitudinal, Randomized, Controlled Trial Of Advance Care Planning For Teens With Cancer: Anxiety, Depression, Quality Of Life, Advance Directives, Spirituality
Adolescent; Adult; Advance Care Planning/statistics & Numerical Data; Advance Directives/psychology; Advance Directives/statistics & Numerical Data; Anxiety/complications; Anxiety/psychology; Depression/complications; Depression/psychology; Family; Feasibility Studies; Female; Follow-up Studies; Humans; Longitudinal Studies; Male; Neoplasms/complications; Neoplasms/psychology; Patient Satisfaction/statistics & Numerical Data; Quality Of Life/psychology; Spirituality; Surveys And Questionnaires; United States; Young Adult
Adolescent; Advance Care Planning; Advance Directive; African-american; Cancer; Communication; Decision-making; End Of Life; Family Intervention; Pediatric Palliative Care
To test the feasibility, acceptability and safety of a pediatric advance care planning intervention, Family-Centered Advance Care Planning for Teens With Cancer (FACE-TC).
METHODS:
Adolescent (age 14-20 years)/family dyads (N = 30) with a cancer diagnosis participated in a two-armed, randomized, controlled trial. Exclusion criteria included severe depression and impaired mental status. Acceptability was measured by the Satisfaction Questionnaire. General Estimating Equations models assessed the impact of FACE-TC on 3-month post-intervention outcomes as measured by the Pediatric Quality of Life Inventory 4.0 Generic Core Scale, the Pediatric Quality of Life Inventory 4.0 Cancer-Specific Module, the Beck Depression and Anxiety Inventories, the Spiritual Well-Being Scale of the Functional Assessment of Chronic Illness Therapy-IV, and advance directive completion.
RESULTS:
Acceptability was demonstrated with enrollment of 72% of eligible families, 100% attendance at all three sessions, 93% retention at 3-month post-intervention, and 100% data completion. Intervention families rated FACE-TC worthwhile (100%), whereas adolescents' ratings increased over time (65%-82%). Adolescents' anxiety decreased significantly from baseline to 3 months post-intervention in both groups (β = -5.6; p = .0212). Low depressive symptom scores and high quality of life scores were maintained by adolescents in both groups. Advance directives were located easily in medical records (100% of FACE-TC adolescents vs. no controls). Oncologists received electronic copies. Total Spirituality scores (β = 8.1; p = .0296) were significantly higher among FACE-TC adolescents versus controls. The FACE-TC adolescents endorsed the best time to bring up end-of-life decisions: 19% before being sick, 19% at diagnosis, none when first ill or hospitalized, 25% when dying, and 38% for all of the above.
CONCLUSIONS:
Family-Centered Advance Care Planning for Teens With Cancer demonstrated feasibility and acceptability. Courageous adolescents willingly participated in highly structured, in-depth pediatric advance care planning conversations safely.
M.E. Lyon; Wang J
Journal Of Adolescent Health
2014
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DOI: 10.1016/j.jadohealth.2013.10.206
Protocol: Evaluating The Impact Of A Nation-wide Train-the-trainer Educational Initiative To Enhance The Quality Of Palliative Care For Children With Cancer
Adolescent; Canada; Child; Child Preschool; Curriculum/standards; Health Personnel/education; Humans; Neoplasms/therapy; Palliative Care/methods; Palliative Care/standards; Pediatrics/methods; Program Evaluation; Quality Of Life/psychology; Teaching/standards
Pediatrics; Palliative Care; Cancer Quality Care; Education Knowledge Translation
Background
There are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe suboptimal care. In order to address these gaps, we will implement and evaluate a national roll-out of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a ‘Train-the-Trainer’ model.
Methods/design
In this study we are using a pre- post-test design and an integrated knowledge translation approach to assess the impact of the educational roll-out in four areas: 1) self-assessed knowledge of health professionals; 2) knowledge dissemination outcomes; 3) practice change outcomes; and 4) quality of palliative care. The quality of palliative care will be assessed using data from three sources: a) parent and child surveys about symptoms, quality of life and care provided; b) health record reviews of deceased patients; and c) bereaved parent surveys about end-of-life and bereavement care. After being trained in EPEC®-Pediatrics, ‘Master Facilitators’ will train ‘Regional Teams’ affiliated with 16 pediatric oncology programs in Canada. Each team will consist of three to five health professionals representing oncology, palliative care, and the community. Each team member will complete online modules and attend one of two face-to-face conferences, where they will receive training and materials to teach the EPEC®-Pediatrics curriculum to ‘End-Users’ in their region. Regional Teams will also choose a Tailored Implementation of Practice Standards (TIPS) Kit to guide implementation of a quality improvement project in their region; support will be provided via quarterly meetings with Co-Leads and via a listserv and webinars with other teams.
Discussion
Through this study we aim to raise the level of pediatric palliative care education amongst health care professionals in Canada. Our study will be a significant step forward in evaluation of the impact of EPEC®-Pediatrics both on dissemination outcomes and on care quality at a national level. Based on the anticipated success of our project we hope to expand the EPEC®-Pediatrics roll-out to health professionals who care for children with non-oncological life-threatening conditions.
Widger K; Friedrichsdorf SJ; Wolfe J; Liben S; Pole JD; Bouffet E; Greenberg M; Husain A; Siden H; Whitlock JA; Rapoport A
Bmc Palliative Care
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1186/s12904-016-0085-8
Listening To Parents: The Role Of Symptom Perception In Pediatric Palliative Home Care
Adult; Cross-sectional Studies; Death; Dyspnea/diagnosis; Dyspnea/psychology; Female; Home Care Services/standards; Humans; Male; Pain/diagnosis; Pain/psychology; Palliative Care/methods; Palliative Care/psychology; Parents/psychology; Pediatrics/methods; Perception; Quality Of Life/psychology; Retrospective Studies; Surveys And Questionnaires; Symptom Assessment/psychology
End-of-life Symptoms; Pediatric Palliative Home Care; Symptom Perception
OBJECTIVE:
This study analyzes symptom perception by parents and healthcare professionals and the quality of symptom management in a pediatric palliative home care setting and identifies which factors contribute to a high quality of palliative and end-of-life care for children.
METHODS:
In this retrospective, cross-sectional study, parents were surveyed at the earliest three months after their child's death. All children were cared for by a specialized home pediatric palliative care team that provides a 24/7 medical on-call service. Questionnaires assessed symptom prevalence and intensity during the child's last month of life as perceived by parents, symptom perception, and treatment by medical staff. The responses were correlated with essential palliative care outcome measures (e.g., satisfaction with the care provided, quality-of-life of affected children and parents, and peacefulness of the dying phase).
RESULTS:
Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures could be treated more successfully than other symptoms. Successful symptom perception was achieved in most cases and predicted the quality of symptom treatment (R 2, 0.612). Concordant assessment of symptom severity between parents and healthcare professionals (HCPs) improved the satisfaction with the care provided (p = 0.037) as well as the parental quality-of-life (p = 0.041). Even in cases with unsuccessful symptom control, parents were very satisfied with the SHPPC team's care (median 10; numeric rating scale 0-10) and rated the child's death as highly peaceful (median 9). Significance of the results: The quality and the concordance of symptom perception between parents and HCPs essentially influence parental quality-of-life as well as parental satisfaction and constitute a predictive factor for the quality of symptom treatment and palliative care.
Vollenbroich R; Borasio GD; Duroux A; Grasser M; Brandstatter M; Fuhrer M
Palliative & Supportive Care
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1017/S1478951515000462
Families' Priorities In Life-limiting Illness: Improving Quality With Online Empowerment
Adolescent; Child; Child Preschool; Disabled Children/psychology; Family; Female; Hospice; Humans; Infant; Internet; Longitudinal Studies; Male; Palliative Care; Parents/psychology; Power (psychology); Quality Of Life/psychology; Social Support; Surveys And Questionnaires; United Kingdom; Young Adult
Child; Hospice; Outcome; Parents; Quality Of Life
OBJECTIVE:
Improving quality of life (QOL) is the central focus of palliative care support for children with life-limiting illness (LLI), but achieving this can be challenging.
INTERVENTION:
MyQuality is an online tool that enables families to choose and monitor parameters they identify as having an impact on their QOL, which aims to improve patient-professional communications and also to enhance patient empowerment within healthcare dialogues.
DESIGN:
A longitudinal, multisite mixed-method evaluation of MyQuality. Families were invited to use MyQuality and completed semi-structured interviews and a Family Empowerment Scale (FES) at T=0 and T+3 months.
PATIENTS AND SETTING:
Thirty-two families of children with LLIs, attending three children's hospices in one UK region.
OUTCOME MEASURES:
Website access, usage patterns and parameter choice, FES scores and qualitative evaluation of interviews.
RESULTS:
23/32 families chose to use the website. Mean duration of use was 106 days (range 2-301), with families choosing two or three parameters (range 1-15), most commonly seizures (24/32), constipation (9/32), pain (6/32) and sleep problems (6/32). Mean FES scores increased over time (3.45-3.85). Interview feedback confirmed the acceptability and ease of use of the website, and the value of a graphic record of change over time to support ongoing management and collaborative review of medical, nursing or social interventions.
CONCLUSIONS:
The identification and monitoring of patient-generated priorities via the MyQuality website empowers families and supports collaboration between parents and professionals to ensure that palliative care is truly patient and family centred.
Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/
Harris N; Beringer A; Fletcher M
Archives Of Disease In Childhood
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
doi: 10.1136/archdischild-2015-308769