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1.
Qual Life Res ; 33(4): 927-939, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38183562

RESUMO

PURPOSE: Understanding people's response to the pandemic needs to consider individual differences in priorities and concerns. The present study sought to understand how individual differences in cognitive-appraisal processes might moderate the impact of three COVID-specific factors-hardship, worry, and social support-on reported depression. METHODS: This longitudinal study of the psychosocial impact of the COVID-19 pandemic included 771 people with data at three timepoints over 15.5 months. Participants were recruited from panels of chronically ill or general population samples. Depression was measured by an item response theory validated depression index created using items from existing measures that reflected similar content to the Patient Health Questionnaire-8. COVID-specific factors of hardship, worry, and social support were assessed with items compiled by the National Institutes of Health. The Quality of Life Appraisal Profilev2 Short-Form assessed cognitive appraisal processes. A series of random effects models examined whether appraisal moderated the effects of hardship, worry, and social support on depression over time. RESULTS: Over time the association between low social support and depression was greater (p = 0.0181). Emphasizing the negative was associated with exacerbated depression, in particular for those with low social support (p = 0.0007). Focusing on demands and habituation was associated with exacerbated depression unless one experienced greater hardship (p = 0.0074). There was a stronger positive connection between recent changes and depression for those people with higher worry scores early in the pandemic as compared to later, but a stronger positive correlation for those with lower worry scores later in the pandemic (p = 0.0015). Increased endorsement of standards of comparison, emphasizing the negative, problem goals, and health goals was associated with worse depression scores (all p < 0.0001). People who were younger, disabled, or had greater difficulty paying bills also reported worse depression (p < 0.0001, 0.0001, and 0.002, respectively). CONCLUSION: At the aggregate level, COVID-specific stressors changed over the course of the pandemic, whereas depression and social-support resources seemed stable. However, deeper analysis revealed substantial individual differences. Cognitive-appraisal processes showed considerable variability across individuals and moderated the impact of COVID-specific stressors and resources over time. Future work is needed to investigate whether coaching individuals away from maladaptive cognitive-appraisal processes can reduce depression and lead to better overall well-being.


Assuntos
COVID-19 , Humanos , COVID-19/epidemiologia , Pandemias , Qualidade de Vida/psicologia , Individualidade , Estudos Longitudinais , Apoio Social
2.
Qual Life Res ; 33(2): 293-315, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37702809

RESUMO

PURPOSE: The objective of this systematic review was to describe the prevalence and magnitude of response shift effects, for different response shift methods, populations, study designs, and patient-reported outcome measures (PROM)s. METHODS: A literature search was performed in MEDLINE, PSYCINFO, CINAHL, EMBASE, Social Science Citation Index, and Dissertations & Theses Global to identify longitudinal quantitative studies that examined response shift using PROMs, published before 2021. The magnitude of each response shift effect (effect sizes, R-squared or percentage of respondents with response shift) was ascertained based on reported statistical information or as stated in the manuscript. Prevalence and magnitudes of response shift effects were summarized at two levels of analysis (study and effect levels), for recalibration and reprioritization/reconceptualization separately, and for different response shift methods, and population, study design, and PROM characteristics. Analyses were conducted twice: (a) including all studies and samples, and (b) including only unrelated studies and independent samples. RESULTS: Of the 150 included studies, 130 (86.7%) detected response shift effects. Of the 4868 effects investigated, 793 (16.3%) revealed response shift. Effect sizes could be determined for 105 (70.0%) of the studies for a total of 1130 effects, of which 537 (47.5%) resulted in detection of response shift. Whereas effect sizes varied widely, most median recalibration effect sizes (Cohen's d) were between 0.20 and 0.30 and median reprioritization/reconceptualization effect sizes rarely exceeded 0.15, across the characteristics. Similar results were obtained from unrelated studies. CONCLUSION: The results draw attention to the need to focus on understanding variability in response shift results: Who experience response shifts, to what extent, and under which circumstances?


Assuntos
Qualidade de Vida , Projetos de Pesquisa , Humanos , Qualidade de Vida/psicologia , Medidas de Resultados Relatados pelo Paciente
3.
Qual Life Res ; 33(3): 767-776, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38133786

RESUMO

PURPOSE: Patients with coronary artery disease (CAD) experience significant angina symptoms and lifestyle changes. Revascularization procedures can result in better patient-reported outcomes (PROs) than optimal medical therapy (OMT) alone. This study evaluates the impact of response shift (RS) on changes in PROs of patients with CAD across treatment strategies. METHODS: Data were from patients with CAD in the Alberta Provincial Project on Outcome Assessment in Coronary Heart Disease (APPROACH) registry who completed the 16-item Canadian version of the Seattle Angina Questionnaire at 2 weeks and 1 year following a coronary angiogram. Multi-group confirmatory factor analysis (MG-CFA) was used to assess measurement invariance across treatment groups at week 2. Longitudinal MG-CFA was used to test for RS according to receipt of coronary artery bypass grafting (CABG), percutaneous coronary intervention (PCI), or optimal medical therapy (OMT) alone. RESULTS: Of the 3116 patients included in the analysis, 443 (14.2%) received CABG, 2049(65.8%) PCI, and the remainder OMT alone. The MG-CFA revealed a partial-strong invariance across the treatment groups at 2 weeks (CFI = 0.98, RMSEA [90% CI] = 0.05 [0.03, 0.06]). Recalibration RS was detected on the Angina Symptoms and Burden subscale and its magnitude in the OMT, PCI, and CABG groups were 0.32, 0.28, and 0.53, respectively. After adjusting for RS effects, the estimated target changes were largest in the CABG group and negligible in the OMT group. CONCLUSION: Adjusting for RS is recommended in studies that use SAQ-CAN to assess changes in patients with CAD who have received revascularization versus OMT alone.


Assuntos
Doença da Artéria Coronariana , Intervenção Coronária Percutânea , Humanos , Doença da Artéria Coronariana/cirurgia , Intervenção Coronária Percutânea/efeitos adversos , Qualidade de Vida/psicologia , Angina Pectoris , Alberta , Resultado do Tratamento
4.
Qual Life Res ; 33(5): 1241-1256, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38427288

RESUMO

PURPOSE: Statistical power for response shift detection with structural equation modeling (SEM) is currently underreported. The present paper addresses this issue by providing worked-out examples and syntaxes of power calculations relevant for the statistical tests associated with the SEM approach for response shift detection. METHODS: Power calculations and related sample-size requirements are illustrated for two modelling goals: (1) to detect misspecification in the measurement model, and (2) to detect response shift. Power analyses for hypotheses regarding (exact) overall model fit and the presence of response shift are demonstrated in a step-by-step manner. The freely available and user-friendly R-package lavaan and shiny-app 'power4SEM' are used for the calculations. RESULTS: Using the SF-36 as an example, we illustrate the specification of null-hypothesis (H0) and alternative hypothesis (H1) models to calculate chi-square based power for the test on overall model fit, the omnibus test on response shift, and the specific test on response shift. For example, we show that a sample size of 506 is needed to reject an incorrectly specified measurement model, when the actual model has two-medium sized cross loadings. We also illustrate power calculation based on the RMSEA index for approximate fit, where H0 and H1 are defined in terms of RMSEA-values. CONCLUSION: By providing accessible resources to perform power analyses and emphasizing the different power analyses associated with different modeling goals, we hope to facilitate the uptake of power analyses for response shift detection with SEM and thereby enhance the stringency of response shift research.


Assuntos
Análise de Classes Latentes , Humanos , Modelos Estatísticos , Tamanho da Amostra , Qualidade de Vida
5.
Sleep Breath ; 28(5): 2247-2254, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-39046658

RESUMO

PURPOSE: Although the validity of the Epworth Sleepiness Scale (ESS) as an effectiveness measure for sleep apnea treatments such as continuous positive airway pressure (CPAP) has been supported by multiple studies, some researchers continue to challenge it. They suggest that in addition to its impact on relieving patients' daytime sleepiness, CPAP also alters the internal standards patients use to evaluate their sleepiness (i.e., response shift; RS), confounding the meaning of the difference in the ESS scores. We believe an issue yet to be addressed in this debate is that all existing evidence of RS has been obtained through the then-test approach, a retrospective method sensitive to various cognitive mechanisms. Thus, in the current study, we re-examined this issue using the structural equation modeling (SEM) approach, a method that can be directly applied to randomized clinical trial (RCT) data without retrospective measures. METHODS: With the ESS data from two independent RCTs, we conducted cross-sectional and longitudinal measure invariance tests in SEM to examine whether CPAP would lead to RS. RESULTS: The ESS demonstrated cross-sectional and longitudinal scalar invariance against CPAP treatments. Its factorial pattern, loadings, and thresholds were invariant between the treatment and control groups and pre- and post-treatment, supporting the comparability of the observed mean ESS scores across time and groups. CONCLUSION: Our results support the validity of the average difference scores of the ESS for quantifying the effectiveness of CPAP on group-level daytime sleepiness in RCTs with relatively large sample sizes.


Assuntos
Pressão Positiva Contínua nas Vias Aéreas , Distúrbios do Sono por Sonolência Excessiva , Psicometria , Apneia Obstrutiva do Sono , Humanos , Distúrbios do Sono por Sonolência Excessiva/terapia , Distúrbios do Sono por Sonolência Excessiva/diagnóstico , Masculino , Feminino , Pessoa de Meia-Idade , Apneia Obstrutiva do Sono/terapia , Reprodutibilidade dos Testes , Estudos Transversais , Adulto , Avaliação de Resultados em Cuidados de Saúde , Resultado do Tratamento , Idoso , Estudos Longitudinais , Inquéritos e Questionários
6.
BMC Musculoskelet Disord ; 25(1): 595, 2024 Jul 29.
Artigo em Inglês | MEDLINE | ID: mdl-39069610

RESUMO

BACKGROUND: With the increased use of patient-reported outcomes measures (PROMs) to assess spine surgery outcomes, it is important to understand how patients interpret their health changes over time. The measurement of cognitive-appraisal processes enables the quantification of how individuals think about quality of life (QOL). This study examined how appraisal processes were associated with patients' views of their role in managing their health-patient activation. METHODS: This longitudinal cohort study from August 2019 to January 2022 included 222 adults undergoing spine surgery for cervical (n = 107) and/or lumbar (n = 148) pathology at an academic medical center. PROMs assessed disability (Neck Disability Index for cervical or Oswestry Disability Index for lumbar) and mental health (PROMIS-29 v2.0), cognitive-appraisal processes (QOLAPv2-SF), and patient activation (Patient Activation Measure). ANOVA models were used to examine the relationships between QOL and cognitive appraisal processes before and after surgery, overall and stratified by patient-activation stage. Effect sizes facilitated interpretation. RESULTS: There were significant improvements in pain-related disability and mental health following surgery. Cognitive appraisal processes explained substantial amounts of variance, particularly with changes in mental health (45% before surgery, 75% at three months, and 63%, at 12-months after surgery). With respect to physical disability, less disability was associated with a lesser focus on negative aspects of QOL. Appraisal explained the most variance before surgery for high-activation patients. At 12-months post-surgery, however, appraisal explained the most variance for the low-activation patients. Appraisal explained similar amounts of variance in mental health at baseline and three-months post-surgery for all activation groups, but substantially more variance in the low-activation group at 12-months post-surgery. There were differences in the direction of appraisal-outcome associations by activation group in selected appraisal items/domains. CONCLUSIONS: Cognitive-appraisal processes demonstrate a significant relationship with QOL among spine surgery patients. These processes explain substantial variance in pain-related disability and mental health, especially among those high in activation before surgery and those low in activation at 12-months post-surgery. Our findings suggest that patients' ways of thinking about their health may be effective targets of motivational coaching, to help them become more engaged over the recovery trajectory.


Assuntos
Cognição , Avaliação da Deficiência , Saúde Mental , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Humanos , Feminino , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Adulto , Cognição/fisiologia , Estudos Longitudinais , Idoso , Participação do Paciente , Vértebras Lombares/cirurgia , Vértebras Cervicais/cirurgia
7.
Psychooncology ; 32(7): 1085-1095, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-37189277

RESUMO

BACKGROUND: Treatment-related late effects can worsen over time among cancer survivors. Such worsening health states may trigger changes in internal standards, values, or conceptualization of quality-of-life (QOL). This "response-shift" phenomenon can jeopardize the validity of QOL assessment, and misrepresent QOL comparisons over time. This study tested response-shift effects in reporting future-health concerns among childhood cancer survivors who experienced progression in chronic health conditions (CHCs). METHODS: 2310 adult survivors of childhood cancer from St. Jude Lifetime Cohort Study completed a survey and clinical assessment at two or more timepoints. Based on 190 individual CHCs graded for adverse-event severity, global CHC burden was classified as "progression" or "non-progression". QOL was assessed using the SF-36TM eight domains and physical- and mental-component summary scores (PCS, MCS). A single global item measured concerns about future health. Random-effects models comparing survivors with and without progressive global CHC burden (progressors vs. non-progressors) evaluated response-shift effects (recalibration, reprioritization, reconceptualization) in reporting future-health concerns. RESULTS: Compared with non-progressors, progressors were more likely to de-emphasize (or downplay) overall physical and mental health in evaluating future-health concerns (p-values<0.05), indicating recalibration response-shift, and more likely to de-emphasize physical health earlier rather than later in follow-up (p-value<0.05), indicating reprioritization response-shift. There was evidence for a reconceptualization response-shift with progressor classification associated with worse-than-expected future-health concerns and physical health, and better-than-expected pain and role-emotional functioning (p-values<0.05). CONCLUSION: We identified three types of response-shift phenomena in reporting concerns about future health among childhood cancer survivors. Survivorship care or research should consider response-shift effects when interpreting changes in QOL over time.


Assuntos
Sobreviventes de Câncer , Neoplasias , Adulto , Humanos , Criança , Sobreviventes de Câncer/psicologia , Estudos de Coortes , Estudos Prospectivos , Qualidade de Vida/psicologia , Neoplasias/psicologia
8.
Methods ; 204: 327-339, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-34998982

RESUMO

The growing interest in patient perception and experience in healthcare has led to an increase in the use of patient-reported outcomes (PRO) data. However, chronically ill patients may regularly adapt to their disease and, as a consequence, might change their perception of the PRO being measured. This phenomenon named response shift (RS) may occur differently depending on clinical and individual characteristics. The RespOnse Shift ALgorithm at the Item level (ROSALI), a method for RS analysis at the item level based on Rasch models, has recently been extended to explore heterogeneity of item-level RS between two groups of patients. The performances of ROSALI in terms of RS detection at the item level and biases of estimated differences in latent variable means were assessed. A simulation study was performed to investigate four scenarios: no RS, RS in only one group, RS affecting both groups either in a similar or a different way. Performances of ROSALI were assessed using rates of false detection of RS when no RS was simulated and a set of criteria (presence of RS, correct identification of items and groups affected by RS) when RS was simulated. Rates of false detection of RS were low indicating that ROSALI satisfactorily prevents from mistakenly inferring RS. ROSALI is able to detect RS and identify the item and group(s) affected when RS affects all response categories of an item in the same way. The performances of ROSALI depend mainly on the sample size and the degree of heterogeneity of item-level RS.


Assuntos
Medidas de Resultados Relatados pelo Paciente , Projetos de Pesquisa , Viés , Doença Crônica , Simulação por Computador , Humanos
9.
Health Qual Life Outcomes ; 21(1): 37, 2023 Apr 25.
Artigo em Inglês | MEDLINE | ID: mdl-37098588

RESUMO

BACKGROUND: Quality of life questionnaires are often used in the assessment of rehabilitation of hearing-impaired patients with a cochlear implant. However, a prospective study with a systematic retrospective evaluation of the preoperative quality of life after surgery has not yet been conducted and may reveal a change in internal standards, such as a response shift, due to the implantation and hearing rehabilitation. METHODS: The Nijmegen Cochlear Implant Questionnaire (NCIQ) was used for assessing hearing related quality of life. It has three general domains (physical, psychological and social) and six subdomains. Seventeen patients were tested before (t0) and retrospectively (then-test; pre-t1) and acutely postoperative (post-t1) after cochlear implantation. Observed changes, then-test changes, response shifts and effect sizes were calculated. Non-parametric statistical methods were used. RESULTS: The NCIQ total score was 52.32 ± 18.69 (mean, standard deviation) for t0, 59.29 ± 14.06 for pre-t1 and 67.65 ± 26.02 for post-t1 questioning. The observed change was statistically significant in all domains but in speech production. Response shift was statistically significant in the total score and in part of the domains. The effect sizes for the response shift were moderate (> 0.5) in the total score, psychological, social general scores and subdomains. CONCLUSIONS: In this study we found that response shift does exist in adults with severe to profound hearing loss undergoing cochlear implantation. By advising the participants to deactivate the implant for the then-test, recall bias and noise were minimized. The clinical significance of the response shift was present in the total score and in the social and psychological domains. TRIAL REGISTRATION: This study was retrospectively registered with the German Clinical Trial Register, TRN DRKS00029467, on 07/08/2022.


Assuntos
Implante Coclear , Adulto , Humanos , Implante Coclear/métodos , Implante Coclear/psicologia , Estudos Prospectivos , Qualidade de Vida , Estudos Retrospectivos , Audição , Inquéritos e Questionários , Resultado do Tratamento
10.
Qual Life Res ; 32(8): 2165-2178, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-36757572

RESUMO

PURPOSE: Our aim is to advance response shift research by explicating the implications of published syntheses by the Response Shift - in Sync Working Group in an integrative way and suggesting ways for improving the quality of future response shift studies. METHODS: Members of the Working Group further discussed the syntheses of the literature on definitions, theoretical underpinnings, operationalizations, and response shift methods. They outlined areas in need of further explication and refinement, and delineated additional implications for future research. RESULTS: First, the proposed response shift definition was further specified and its implications for the interpretation of results explicated in relation to former, published definitions. Second, the proposed theoretical model was further explained in relation to previous theoretical models and its implications for formulating research objectives highlighted. Third, ways to explore alternative explanations per response shift method and their implications for response shift detection and explanation were delineated. The implications of the diversity of the response shift methods for response shift research were presented. Fourth, the implications of the need to enhance the quality and reporting of the response shift studies for future research were sketched. CONCLUSION: With our work, we intend to contribute to a common language regarding response shift definitions, theory, and methods. By elucidating some of the major implications of earlier work, we hope to advance response shift research.


Assuntos
Modelos Teóricos , Qualidade de Vida , Humanos , Qualidade de Vida/psicologia , Projetos de Pesquisa
11.
Qual Life Res ; 32(11): 3099-3108, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-37326699

RESUMO

PURPOSE: Because physical-mental comorbidity in children is relatively common, this study tested for response shift (RS) in children with chronic physical illness using a parent-reported measure of child psychopathology. METHODS: Data come from Multimorbidity in Children and Youth across Life-course (MY LIFE), a prospective study of n = 263 children aged 2-16 years with physical illness in Canada. Parents provided information on child psychopathology using the Ontario Child Health Study Emotional Behavioral Scales (OCHS-EBS) at baseline and 24 months. Oort's structural equation modeling was used to test for different forms of RS in parent-reported assessments between baseline and 24 months. Model fit was evaluated using root mean square error of approximation (RMSEA), comparative fit index (CFI), and standardized root mean residual (SRMR). RESULTS: There were n = 215 (81.7%) children with complete data and were included in this analysis. Of these, n = 105 (48.8%) were female and the mean (SD) age was 9.4 (4.2) years. A two-factor measurement model provided good fit to the data [RMSEA (90% CI) = 0.05 (0.01, 0.10); CFI = 0.99; SRMR = 0.03]. Non-uniform recalibration RS was detected on the conduct disorder subscale of the OCHS-EBS. This RS effect had negligible impact on the longitudinal change in externalizing and internalizing disorders construct over time. CONCLUSIONS: Response shift detected on the conduct disorder subscale of the OCHS-EBS, indicated that parents of children with physical illness may recalibrate their responses on child psychopathology over 24 months. Researchers and health professionals should be aware of RS when using the OCHS-EBS to assess child psychopathology over time.


Assuntos
Transtorno da Conduta , Qualidade de Vida , Adolescente , Humanos , Criança , Feminino , Masculino , Estudos Prospectivos , Qualidade de Vida/psicologia , Ontário/epidemiologia , Pais/psicologia
12.
Qual Life Res ; 32(4): 1069-1084, 2023 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-36260164

RESUMO

BACKGROUND: Adolescent and young adult (AYA) cancer survivors (first diagnosed with cancer at age 15-39) are distinct within the cancer community due to their unique challenges and diverse psycho-behavioral characteristics. This study aimed to analyze psycho-behavioral pathways and further explore the mediating role of cognitive appraisals on AYA cancer survivors' quality of life (QoL). METHODS: Three hundred and eighty-nine AYA cancer survivors were eligible for analyses and recruited to self-administer questionnaires on QoL (the Chinese version of EORTC Quality of Life Questionnaire-C30 v3.0), resilience, coping, and appraisal on site. This study performed structural equation modeling (SEM) to examine pathways on QoL based on the Rapkin & Schwartz QoL Appraisal Model. RESULTS: The average age of participants (47.6% female) was 32.7 ± 4.1 years. The SEM results closely fit the measured data (RMSEA = 0.053, GFI = 0.955, CFI = 0.964, SRMR = 0.052). The final model showed direct negative effects of later clinical-stage, more comorbidities, and more Acceptance-Resignation coping on QoL; indirect positive effects of better resilience on QoL through less Acceptance-Resignation coping (ß = 0.286, P = 0.002). Appraisal mediated the effects of treatment and resilience on QoL (ß = -0.024, P = 0.038). Further, Calm, Peaceful, and Active appraisal patterns were associated with improved Cognitive Functioning (ß = 0.119, P = 0.009). CONCLUSION: Appraisal, coping, and resilience could significantly mediate the effects of cancer and its treatment on the QoL of AYA cancer survivors. Future interventions targeting cognitive appraisals and psycho-behaviors will be helpful. Figuring out what matters to such a unique population and how they appraise a cancer diagnosis through treatment trajectories could help nurses adjust support.


Assuntos
Sobreviventes de Câncer , Neoplasias , Humanos , Feminino , Adulto Jovem , Adolescente , Adulto , Masculino , Qualidade de Vida/psicologia , Sobreviventes de Câncer/psicologia , Neoplasias/psicologia , Emoções , Adaptação Psicológica , Inquéritos e Questionários
13.
Int J Behav Med ; 30(4): 473-485, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-35869349

RESUMO

BACKGROUND: Cognitive behavioral therapy (CBT) is an evidence-based intervention for severe fatigue. Changes in patients' fatigue scores following CBT might reflect not only the intended relief in fatigue but also response shift, a change in the meaning of patients' self-evaluation. Objectives were to (1) identify the occurrence of response shift in patients undergoing CBT, (2) determine the impact of response shift on the intervention effect, and (3) investigate whether changes in fatigue-related cognitions and perceptions, targeted during CBT, are associated with response shift. METHODS: Data of three randomized controlled trials testing the efficacy of CBT in individuals with chronic fatigue syndrome (CFS, n = 222), cancer (n = 123), and diabetes (n = 107) were re-analyzed. Fatigue severity was measured with 8 items from the Checklist Individual Strength, a valid and widely used self-report questionnaire. Structural equation modelling was applied to assess lack of longitudinal measurement invariance, as indication of response shift. RESULTS: As expected, in all three trials, response shift was indicated in the CBT groups, not the control groups. Response shift through reprioritization was indicated for the items "Physically, I feel exhausted" (CFS) and "I tire easily" (cancer, diabetes), which became less vs. more important to the measurement of fatigue, respectively. However, this did not affect the intervention effects. Some changes in cognitions and perceptions were associated with the response shifts. CONCLUSIONS: CBT seems to induce response shift through reprioritization across patient groups, but its occurrence does not affect the intervention effect. Future research should corroborate these findings and investigate whether patients indeed change their understanding of fatigue.


Assuntos
Terapia Cognitivo-Comportamental , Síndrome de Fadiga Crônica , Humanos , Síndrome de Fadiga Crônica/terapia , Síndrome de Fadiga Crônica/psicologia , Ensaios Clínicos Controlados Aleatórios como Assunto , Inquéritos e Questionários , Autorrelato , Resultado do Tratamento
14.
J Relig Health ; 2023 Dec 05.
Artigo em Inglês | MEDLINE | ID: mdl-38049708

RESUMO

The Care of Late-Stage Parkinsonism (CLaSP) study is a longitudinal, multicentre, prospective cohort study to assess the needs and provision of care for people with late-stage Parkinson's disease and their caregivers in six European countries. As a cross-sectional study within the CLaSP study, 509 people with Parkinson's disease completed the "Schedule-for-Meaning-in-Life-Evaluation" (SMiLE) questionnaire. We compared the results to those of a representative sample of healthy participants (n = 856). People with late-stage Parkinson's disease reported family, partnership and spirituality as the greatest areas of importance. Overall, they had lower SMiLE indices compared to healthy participants. People with late-stage Parkinson's disease rated the importance of core meaning in life areas (namely family, social relations and health) as significantly lower than the representative cohort and they also rated satisfaction as significantly lower in most areas. In conclusion, people with late-stage Parkinson's disease do have areas where they can find meaning, such as family, partnership and spirituality. However, they indicate a lack of fulfilment of their individual MiL, reflected by low satisfaction rates in the majority of meaning in life categories. The need for spiritual support for people with Parkinson's disease indicates the important role of chaplains to help people with Parkinson's disease maintain meaning in life.

15.
Health Qual Life Outcomes ; 20(1): 20, 2022 Feb 05.
Artigo em Inglês | MEDLINE | ID: mdl-35123496

RESUMO

BACKGROUND: Response Shift (RS) refers to the idea that an individual may undergo changes in its health-related quality of life (HRQOL). If internal standard, values, or reconceptualization of HRQOL change over time, then answer to the same items by the same individuals may not be comparable over time. Traditional measures to evaluate RS is prone to bias and strong methodologies to study the existence of this phenomenon is required. The objective is to systematically identify, analyze, and synthesize the existing and recent evidence of statistical methods used for RS detection in HRQOL studies. METHODS: The analysis of selected studies between January 2010 and July 2020 was performed through a systematic review in MEDLINE/PubMed, Scopus, Web of Science, PsycINFO and Google Scholar databases. The search strategy used the terms "Health-Related Quality of Life" and "Response Shift" using the filters "Humans", "Journal Article", "English" and "2010/01/01-2020/07/31". The search was made in August 2020. RESULTS: After considering the inclusion and exclusion criteria, from the total selected articles (675), 107 (15.9%) of the publications were included in the analysis. From these, 79 (71.0%) detected the existence of RS and 86 (80.4%) only used one detection method. The most used methods were Then Test (n = 41) and Oort's Structural Equation Models (SEM) (n = 35). Other method used were Multiple Lineal Regression (n = 7), Mixed-Effect Regression (n = 6), Latent Trajectory Analysis (n = 6), Item Response Theory (n = 6), Logistics Regression (n = 5), Regression and Classification Trees (n = 4) and Relative Importance Method (n = 4). Most of these detected recalibration, including Then Test (n = 27), followed by Oort's SEM that detected the higher combination of RS types: recalibration (n = 24), reprioritization (n = 13) and reconceptualization (n = 7). CONCLUSIONS: There is a continuous interest of studying RS detection. Oort's SEM becomes the most versatile method in its capability for detecting RS in all different types. Despite results from previous systematic reviews, same methods have been used during the last years. We observed the need to explore other alternative methods allowing same detection capacity with robust and highly precise methodology. The investigation on RS detection and types requires more study, therefore new opportunity grows to continue attending this phenomenon through a multidisciplinary perspective.


Assuntos
Qualidade de Vida , Projetos de Pesquisa , Humanos , Modelos Teóricos
16.
Qual Life Res ; 31(1): 61-73, 2022 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-34657280

RESUMO

PURPOSE: Methods for response shift (RS) detection at the individual level could be of great interest when analyzing changes in patient-reported outcome data. Guttman errors (GEs), which measure discrepancies in respondents' answers compared to the average sample responses, might be useful for detecting RS at the individual level between two time points, as RS may induce an increase in the number of discrepancies over time. This study aims to establish the link between recalibration RS and the change in the number of GEs over time (denoted index [Formula: see text]) via simulations and explores the discriminating ability of this index. METHODS: We simulated the responses of individuals affected or not affected by recalibration RS (defined as changes in the patients' standard of measurement) to determine whether simulated individuals with recalibration had a greater change in the number of GEs over time than individuals without recalibration. The effects of factors related to the sample, the questionnaire structure and recalibration were investigated. As an illustrative example, the change in the number of GEs was computed in patients suffering from eating disorders. RESULTS: Within simulations, simulated individuals affected by recalibration had, on average, a greater change in the number of GEs over time than did individuals without RS. Some of the parameters related to the questionnaire structure and recalibration magnitude appeared to have substantial effects on the values of [Formula: see text]. Discriminating abilities appeared, however, globally low. CONCLUSION: Some evidence of the link between recalibration and the change in GEs was found in this study. GEs could be a valuable nonparametric tool for RS detection at a more individual level, but further investigation is needed.


Assuntos
Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Humanos , Qualidade de Vida/psicologia , Inquéritos e Questionários
17.
Qual Life Res ; 31(8): 2247-2257, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-34705159

RESUMO

BACKGROUND: The growth in response-shift methods has enabled a stronger empirical foundation to investigate response-shift phenomena in quality-of-life (QOL) research; but many of these methods utilize certain language in framing the research question(s) and interpreting results that treats response-shift effects as "bias," "noise," "nuisance," or otherwise warranting removal from the results rather than as information that matters. The present project will describe the various ways in which researchers have framed the questions for investigating response-shift issues and interpreted the findings, and will develop a nomenclature for such that highlights the important information about resilience reflected by response-shift findings. METHODS: A scoping review was done of the QOL and response-shift literature (n = 1100 articles) from 1963 to 2020. After culling only empirical response-shift articles, raters characterized how investigators framed and interpreted study research questions (n = 164 articles). RESULTS: Of 10 methods used, papers using four of them utilized terms like "bias" and aimed to remove response-shift effects to reveal "true change." Yet, the investigators' reflections on their own conclusions suggested that they do not truly believe that response shift is error to be removed. A structured nomenclature is proposed for discussing response-shift results in a range of research contexts and response-shift detection methods. CONCLUSIONS: It is time for a concerted and focused effort to change the nomenclature of those methods that demonstrated this misinterpretation. Only by framing and interpreting response shift as information, not bias, can we improve our understanding and methods to help to distill outcomes with and without response-shift effects.


Assuntos
Ruído , Qualidade de Vida , Viés , Humanos , Qualidade de Vida/psicologia
18.
Qual Life Res ; 31(2): 607-620, 2022 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-34173173

RESUMO

PURPOSE: Kidney transplantation (KT) can impact patients' evaluation of health-related quality of life (HRQoL) as they adapt to their new life with a graft and its changes. Patients may adapt to KT in a different way, depending on whether they were on dialysis prior to transplantation or not (i.e. preemptive group). This may result in lack of measurement invariance between these patients' groups and/or over time (i.e. response shift, RS) which may invalidate the between-group comparison of HRQoL change scores. The aim of this study was to investigate and compare RS before and after KT between these two patients' groups. Measurement invariance was investigated between groups and over time with three measurement occasions. METHODS: Adult patients completed the SF-36 at the last visit before KT, and 3, 6 months after. A structural equation model-based procedure was used to (i) detect and take into account measurement non-invariance between groups and RS, if appropriate, (ii) identify the period of occurrence of RS, (iii) study the heterogeneity of RS between the two groups. RESULTS: Before KT (i.e. baseline), measurement invariance was not rejected between dialyzed (n = 196) and preemptive (n = 178) patients' groups. Between baseline and 3 months after KT, similar uniform recalibration was detected on the general health domain in both groups. Uniform recalibration was found between 3- and 6 months after KT on the vitality domain for preemptive patients only. CONCLUSION: HRQoL, adjusted for RS, increased overall for preemptive and dialyzed kidney transplant patients after transplantation. RS may reflect differing adaptation processes following KT.


Assuntos
Transplante de Rim , Qualidade de Vida , Adulto , Humanos , Qualidade de Vida/psicologia , Diálise Renal , Transplantados
19.
Qual Life Res ; 31(2): 437-450, 2022 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-34159517

RESUMO

PURPOSE: The aims of this study were to investigate (1) the extent to which response shift occurs among patients with coronary artery disease (CAD) after coronary revascularization, (2) whether the assessment of changes in health-related quality of life (HRQoL), controlled for response shift, yield more valid estimates of changes in HRQoL, as indicated by stronger associations with criterion measures of change, than without controlling for response shift, and (3) if occurrences of response shift are related to patient characteristics. METHODS: Patients with CAD completed the SF-36 and the Seattle Angina Questionnaire (SAQ7) at baseline and 3 months after coronary revascularization. Sociodemographic, clinical and psychosocial variables were measured with the patient version of the New York Heart Association-class, Subjective Significance Questionnaire, Reconstruction of Life Events Questionnaire (RE-LIFE), and HEXACO personality inventory. Oort's Structural Equation Modeling (SEM) approach was used to investigate response shift. RESULTS: 191 patient completed questionnaires at baseline and at 3 months after treatment. The SF-36 showed recalibration and reprioritization response shift and the SAQ7 reconceptualization response shift. Controlling for these response shift effects did not result in more valid estimates of change. One significant association was found between reprioritization response shift and complete integration of having CAD into their life story, as indicated by the RE-LIFE. CONCLUSION: Results indicate response shift in HRQoL following coronary revascularization. While we did not find an impact of response shift on the estimates of change, the SEM approach provides a more comprehensive insight into the different types of change in HRQoL following coronary revascularization.


Assuntos
Doença da Artéria Coronariana , Qualidade de Vida , Doença da Artéria Coronariana/cirurgia , Humanos , Análise de Classes Latentes , Qualidade de Vida/psicologia , Inquéritos e Questionários
20.
BMC Pregnancy Childbirth ; 22(1): 717, 2022 Sep 20.
Artigo em Inglês | MEDLINE | ID: mdl-36127645

RESUMO

BACKGROUND: For quality-oriented evaluation of prenatal and obstetric care, it is important to systematically consider the perspective of the women receiving care in order to comprehensively assess and optimize quality in a woman-centered manner. Empathy and Shared Decision Making (SDM) are essential components of woman-centered midwifery care. The aim of the study was to analyze measurement invariance of the items of the Consultation and Relational Empathy (CARE) and Shared Decision Making-Questionnaire (SDM-Q-9) scales depending on the prenatal versus obstetric care setting. METHODS: One hundred fifty women retrospectively assessed aspects of woman-centered midwifery care in both prenatal and obstetric care setting. The birth of the child was a maximum of 12 months ago. A structural equation modelling approach was adopted to separate true effects from response shift (RS) effects depending on care setting. The latter were analyzed in terms of recalibration (changing women's internal measurement standards), Reprioritization (changing associations of items and construct) as well as Reconceptualization (redefining the target construct). RESULTS: A response shift model was identified for both assessments (pregnancy/birth: CFI = .96/.96; SRMR = .046/.051). At birth, both scales indicated lower quality of care compared with prenatal care (SDM-Q-9-M/CARE-8-M:|d| = 0.190/0.392). Although no reconceptualization is required for the items of both scales, RS effects are evident for individual items. Due to recalibration and reprioritization effects, the true differences in the items are partly underestimated (SDM-Q-9-M/CARE-8-M: 3/2 items) or overestimated (4/2 items). CONCLUSION: The structure of the constructs SDM and Empathy, indicating woman-centered midwifery care, are moderated by the care settings. To validly assess midwives' empathy and shared decision making from women's perspective, setting-dependent response shift effects have to be considered. The proven item-specific response effects contribute to a better understanding of construct characteristics in woman-centered care by midwives during pregnancy and childbirth.


Assuntos
Tomada de Decisão Compartilhada , Tocologia , Criança , Tomada de Decisões , Empatia , Feminino , Humanos , Recém-Nascido , Participação do Paciente , Gravidez , Estudos Retrospectivos , Vitaminas
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