Dataset Information

Real-life daily activity: the impact of misbeliefs on quality of life among cancer patients.

ABSTRACT:

Background

While side-effects and health-related quality of life (QoL) are routinely assessed in clinical trials, commonly used tools do not measure patients' ability to maintain normal daily activities. QoL can be severely affected directly by the disease, the treatment side-effects and by personal and societal misconceptions promoting avoidance from activities perceived as dangerous for cancer patients. We examined practices of actively treated patients with cancer.

Methods

A questionnaire was designed, assessing daily activities (11 items) and dietary limitations (7 items) distributed between October and December 2019 (before the coronavirus pandemic) among patients treated at the Oncology Division of Tel Aviv Sourasky Medical Center.

Results

The study population comprised 208 patients who participated in the survey. The majority reported at least one social-environmental avoidance or dietary limitation (136, 65% and 120, 57.7%, respectively), including abstaining from social contact, avoiding pets, public domains, traveling and maintaining dietary constraints. Adoption of these measures was not associated with clinical, demographic factors and treatment type. The major sources guiding restrictions came from advice of non-medical personnel (55.7%), the Internet (7.2%) and personal choice by the patients themselves (24%).

Conclusions

Most cancer patients reported compromised daily activities, which are likely attributed to misbeliefs about disease and treatment, and have a deleterious impact on QoL, in its wider sense, namely, the ability to conduct a full and meaningful life. These findings call for the development and implementation of tools examining patients' real-life activity, beyond side-effects or health-related QoL (HRQoL). We propose this assessment as an integral part in the evaluation of new drugs and technologies and as an additional endpoint in pivotal clinical trials.

SUBMITTER: Shachar E

PROVIDER: S-EPMC9271513 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:Knowledge of experiences from prostate cancer is sparse in a longitudinal perspective. From a nursing perspective, results from combined qualitative and quantitative studies are lacking however would present the broadest knowledge base for best practice. Present descriptions of medical-physical symptoms such as urinary, bowel and sexual dysfunction from quantitative inquiries need be complemented with qualitative results. Such knowledge is essential in relation to treatment and communication with patients over the years and not only shortly after surgery.A longitudinal study was formatted to investigate general and specific health quality and sense of coherence quantitative alterations over three years. A general health quality module (EORTC QLC-C30) and a disease-specific module (EORTC PR-25) were applied for the longitudinal study together with the Orientation to life questionnaire (SOC), measuring a persons' sense of coherence. In order to strengthen reliability and compensate for low participation we used the Directed content analysis for interviewing and analysis. The method allows using findings from earlier research when interviewing along with detecting new areas. Twenty-one men were followed over three years and six of them, in the third year, accepted to be interviewed.We found high quality of life ratings and extended the study with follow-up interviews in year three, to investigate whether questionnaire results were in line with interview findings. We found high life quality and functioning ratings that were in line with qualitative descriptions. Interview analysis showed retrieval of life as lived before, yet in a different way, the men never forgot the diagnosis event, had a unique illness history worth hearing, and had come to terms with most treatment-related shortcomings. Sense of coherence ratings were medium to high and confirmed stability over time in comprehensibility, manageability and meaningfulness after prostate cancer treatment.Over the years, the men's negative experiences from shifted into 'a good life' though in a different way than before. The interpretation is supported in the study by quantitative results showing a high degree of functioning. The men's sense of coherence seamed to support their handling of life three years after prostate cancer treatment.

Project description:Background and objectivesLittle is known about the consequences of asthma on daily life physical activity (DLPA). The aim of this study was to evaluate DLPA and determine its relationship to clinical and functional parameters in patients with asthma.MethodsThis was a single-center prospective study of DLPA conducted between May 2015 and June 2016 in northern France. Fifty-one adult patients with asthma and 36 healthy control subjects were enrolled. Four DLPA parameters were assessed for 5 consecutive days with a physical activity monitor: number of steps walked per day (SPD), total energy expenditure (EE, in kcal/day), EE spent in physical activity requiring ?3 metabolic equivalents (METs), and time (min) spent in activities requiring ?3 METs. Clinical characteristics, pulmonary function tests, 6-minute walk test, and four questionnaires (modified Medical Research Council [mMRC] for dyspnea, asthma control test [ACT], quality of life [AQLQ], and hospital anxiety and depression scale [HADS]), were evaluated. Comparisons of DLPA parameters between the two groups were performed using an analysis of covariance adjusted for age, sex, and body mass index (BMI). Relationships between DLPA parameters and patient characteristics were assessed in multivariable linear regression models.ResultsCompared with patients with mild/moderate asthma, those with severe asthma had lower mean (± standard deviation) forced expiratory volume in 1 s (FEV1) (66 ± 24 vs 94 ± 15% predicted, P < 0.001), ACT score (16.7 ± 4.5 vs 19.8 ± 4.2, P = 0.015), and AQLQ score (157 ± 40 vs 184 ± 33, P = 0.012). There were no significant differences between the two groups in SPD (6560 ± 3915 vs 8546 ± 3431; adjusted P = 0.95), EE in physical activity requiring ?3 METs (620 ± 360 vs 660 ± 140 kcal/day; P = 0.86), time spent in activities requiring EE ?3 (120 ± 54 vs 121 ± 32 min/day; P = 0.69), or total EE (2606 ± 570 vs 2666 ± 551 kcal/day; P = 0.80). These four DLPA measures showed strong inter-parameter correlations in patients with asthma (r = 0.37-0.95, all P < 0.01). All four parameters were lower in the patients with asthma group than in the control group: SPD, 7651 ± 3755 vs 11704 ± 4054 (adjusted P < 0.001); EE in activities requiring ?3 METs, 642 ± 360 vs 852 ± 374 kcal/day (adjusted P = 0.041); time spent in activities requiring ?3 EE, 120 ± 73 vs 189 ± 85 min (adjusted P = 0.005); and total EE, 2639 ± 555 vs 2746 ± 449 kcal/day (adjusted P = 0.007). In the patients with asthma group, the number of SPD correlated with age, FEV1, mMRC score, 6-minute walk test distance, and HADS scores, but not with BMI or ACT test score. Using multivariate analysis, the number of SPD was associated with only age, anxiety, and FEV1, whereas total EE was associated with mMRC score and BMI.ConclusionAge, anxiety, and FEV1 were significantly associated with the number of SPD in patients with asthma. Addressing anxiety should be further studied as way to attempt to increase physical activity in patients with asthma.

Project description:BackgroundThe emphasis on treating rheumatoid arthritis (RA) intensively reduces disease activity but its impact in routine care is uncertain. We evaluated temporal changes in disease activities and outcomes in a 10-year prospective observational cohort study of patients in routine care at one unit.MethodsThe Guy's and St Thomas' RA cohort was established in 2005. It involved most RA patients managed in this hospital. Clinical diagnoses of RA were made by rheumatologists. Patients were seen regularly in routine care. Each visit included measurement of disease activity scores for 28 joints (DAS28), health assessment questionnaire scores (HAQ) and EuroQol scores. Patients received intensive treatments targeting DAS28 remission.ResultsIn 1693 RA patients mean DAS28 scores fell from 2005 to 15 by 11% from 4.08 (95% CI: 3.91, 4.25) in 2005 to 3.64 (3.34, 3.78); these falls were highly significant (p?<?0.001). DAS28 components: swollen joint counts fell by 32% and ESR by 24%; in contrast tender joint counts and patient global assessments showed minimal or no reductions. The reduction in DAS28 scores was predominantly between 2005 and 2010, with no falls from 2011 onwards. Associated with falls in mean DAS28s, patients achieving remission increased (18% in 2005; 27% in 2015) and the number with active disease (DAS28?>?5.1) decreased (25% in 2005; 16% in 2015). In 752 patients seen at least annually for 3?years, persisting remission (68 patients) and intermittent remission (376 patients) were associated with less disability and better health related quality of life. Over time biologic use increased, but they were used infrequently in patients in persistent remission.ConclusionsOver 10?years an intensive management strategy in a routine practice setting increased combination DMARD and biologic use: disease activity levels declined; this association is in keeping with a causal relationship. Patients who achieved remission, even transiently, had better functional outcomes than patients never achieving remission.