Dataset Information

The cancer patient's perspective of COVID-19-induced distress-A cross-sectional study and a longitudinal comparison of HRQOL assessed before and during the pandemic.

ABSTRACT:

Background

To permit timely mitigation of adverse effects on overall clinical outcome, it is essential to understand how the pandemic influences distress and health-related quality of life (HRQOL) in cancer patients during the coronavirus disease 2019 (COVID-19) pandemic.

Methods

In this cross-sectional study, adult cancer patients, without COVID-19 symptoms, completed a 13-item questionnaire about the pandemic's impacts on distress and everyday-life; associations with age, sex, or impaired HRQOL were then assessed by binary logistic regressions. In a subsample of patients with HRQOL assessment available from both before and during the pandemic, we evaluated the pandemic's impact on longitudinal changes in HRQOL reported within 6 months before versus during the COVID-19 lockdown using McNemar's test, and thresholds for clinical importance.

Results

We consecutively enrolled 240 patients with solid (50%) or hematological (50%) cancers. Median age was 67 years, 46% were females. The majority ranked heeding their health (80%) and keeping their appointment schedule in hospital (78%) as important. Being younger than 60, or aged 60-70 was independently associated with limitations in everyday life (OR = 3.57, p < 0.001; and 2.05, p = 0.038); female individuals and those with restricted emotional functioning were more distressed by the COVID-19 situation (OR = 2.47, p = 0.040; and 3.17, p = 0.019); the latter group was also significantly more concerned about being a patient at risk (OR = 2.21, p = 0.029). Interestingly, in a subsample of patients (n = 47), longitudinal comparisons pre- versus during the pandemic revealed that HRQOL was not substantially affected by the pandemic.

Conclusion

Particularly younger and female cancer patients, and those with impaired emotional functioning are distressed by COVID-19. During the first COVID-19 lockdown, cancer patients remained predominantly resilient. This analysis highlights the need to mitigate distress situations in vulnerable patients and thereby enhance resilience during pandemics.

SUBMITTER: Koinig KA

PROVIDER: S-EPMC8209623 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:BackgroundOnline longitudinal surveys may be subject to potential biases due to sample attrition. This study was designed to identify potential predictors of attrition using a longitudinal panel survey collected during the COVID-19 pandemic.MethodsThree waves of data were collected using Amazon Mechanical Turk (MTurk), an online crowd-sourced platform. For each wave, the study sample was collected by referencing a US national representative sample distribution of age, gender, and race, based on US census data. Variables included respondents' demographics, medical history, socioeconomic status, COVID-19 experience, changes of health behavior, productivity, and health-related quality of life (HRQoL). Results were compared to pre-pandemic US norms. Measures that predicted attrition at different times of the pandemic were identified via logistic regression with stepwise selection.Results1467 of 2734 wave 1 respondents participated in wave 2 and, 964 of 2454 wave 2 respondents participated in wave 3. Younger age group, Hispanic origin (p ≤ 0.001) and higher self-rated survey difficulty (p ≤ 0.002) consistently predicted attrition in the following wave. COVID-19 experience, employment, productivity, and limited physical activities were commonly observed variables correlated with attrition with specific measures varying by time periods. From wave 1, mental health conditions, average daily hours worked (p = 0.004), and COVID-19 impact on work productivity (p < 0.001) were associated with a higher attrition rate at wave 2, additional to the aforementioned factors. From wave 2, support of social distancing (p = 0.032), being Republican (p < 0.001), and having just enough money to make ends meet (p = 0.003) were associated with predicted attrition at wave 3.ConclusionsAttrition in this longitudinal panel survey was not random. Besides commonly identified demographic factors that contribute to panel attrition, COVID-19 presented novel opportunities to address sample biases by correlating attrition with additional behavioral and HRQoL factors in a constantly evolving environment. While age, ethnicity, and survey difficulty consistently predicted attrition, other factors, such as COVID-19 experience, changes of employment, productivity, physical health, mental health, and financial situation impacted panel attrition during the pandemic at various degrees.

Project description:Background: Choosing between deep brain stimulation (DBS), Levodopa-Carbidopa intestinal gel (LCIG), or continuous subcutaneous Apomorphine infusion (CSAI) in advanced Parkinson's disease is a complex decision. It is paramount to combine evidence with the professional's expertise and the patient's preferences. The patient's preferences can be elicited and integrated into the treatment choice through shared decision-making (SDM). Objective: In this cross-sectional survey study we explored patient's involvement in decision-making and identified facilitators and barriers for shared decision-making (SDM) in advanced Parkinson from the patient's perspective. Methods: We invited 180 Dutch persons with Parkinson who started DBS, LCIG, or CSAI in the previous 3 years to complete a questionnaire. Questions covered three topics; (1) preferred and experienced roles in the decision process for an advanced treatment, (2) information needs to make a decision and actually received information, and (3) factors that had positively or negatively influenced shared decision-making (SDM). Results: One hundred and twenty one participants completed the questionnaire. The large majority preferred to be involved in the decision-making (93%), and most respondents had experienced an active role (85%). In about half of the respondents (47%), their preferred role did not match their experienced role; 28% had a more active role than they would have preferred. Although 77% perceived to be fully informed at the time of decision, only 41% stated they knew all three therapeutic options. Participants identified the most important facilitators for shared decision-making (SDM) at the patient's level (i.e., perceiving the decision to be his own choice), at the neurologist's level (i.e., having expertise on all treatment options, and taking time for the decision), and within the professional-patient relationship (i.e., trust and having an open discussion). The main barriers for shared decision-making (SDM) existed at the patient's level (i.e., perceiving there is no choice), neurologist's level (own treatment preference), and organizational level (i.e., no research available that compares treatments, multiple professionals involved, and lack of consultation time). Conclusions: Patients want to be involved and feel involved when choosing an advanced treatment, but often do not know all treatment options. Implementation of true patient involvement needs personalized information provision on all treatment options and improvement on how this information is communicated.