Assessment of the perceived burden associated with Malignant Melanoma with Pictorial Representation of Illness and Self Measure (PRISM) and Melanoma Concerns Questionnaire (MCQ-28)

Purpose The impact of malignant melanoma (MM) on patients’ psychophysical well-being has been poorly addressed. We aimed to assess the perceived burden in patients with a diagnosis of MM, using two different tools, one generic and one specific for MM, such as Pictorial Representation of Illness and Self Measure (PRISM) and Melanoma Concerns Questionnaire (MCQ-28), respectively. The correlation between PRISM and MCQ-28 subscales and the relevance of disease and patient-related variables were also investigated. Methods This single-centre, cross-sectional study included all adult consecutive MM patients who attended our Dermatology Unit from December 2020 to June 2021. Demographics and disease-related data were recorded. PRISM and MCQ-28 were administered. Results One hundred and seventy-one patients were included (mean age: 59.5 ±14.9 years.; 48.0% males). Median time from MM diagnosis to inclusion was 36 months. Nearly 80% of the patients had in situ or stage I MM. Overall, 22.2% of the patients reported a PRISM score <100mm and similar percentages provided scores indicating impaired quality of life, as assessed with MCQ-28 subscales. A weak, albeit significant, correlation was found between PRISM scores and ACP, CON and SOC2 subscales. The most relevant association found was that between lower PRISM scores and higher-stage MM. Conclusions In the study population, mostly affected with superficial MM, their perception of the burden associated with MM did not appear either particularly dramatic or disabling. PRISM seems a reliable system for capturing and quantifying the domains correlated with the emotive dimension of MM, especially MM-related concerns and willingness to face life

Nationwide Survey on Family-perceived Experiences of Patients With Cancer of Unknown Primary Site

Purpose: Cancer of unknown primary site (CUP) is an aggressive disease with poor prognosis. As research on the experiences of CUP patients and their families is scarce, this study aimed to compare the family-perceived burden of CUP with that of common cancers (lung, colon, and stomach cancer). Additional aims were to explore the association between family-perceived burden and CUP patients’ quality of life (QOL) at end-of-life and family depression.Methods: This was a pre-planned secondary analysis of nationwide cross-sectional survey data from the bereaved family members of patients with cancer who died at 286 institutions. The major measurements were the eight-item family-perceived Burden scale (comprising specialist access, uncertainty, and prolonged diagnosis), Good Death Inventory, and Patient Health Questionnaire 9.Results: Of the total 27,591 survey responses, we analyzed 97 and 717 responses from the family members of patients with CUP and common cancer, respectively. The families of CUP patients scored significantly higher on all three burden subscales than those of common cancer patients (effect sizes: specialist access subscale, 0.3; uncertainty subscale, 0.66; and prolonged diagnosis subscale, 0.69; adjusted P < 0.01). Greater family Burden was significantly associated with lower patient QOL and higher family depression. Burden was significantly associated with being a spouse, second opinion consultation, and diagnosis period of >1 month.Conclusion: The families of CUP patients experience poor specialist access, greater uncertainty, and a prolonged diagnosis. They should be cared for from the initial stages to establish access to specialists, obtain an early diagnosis, and reduce uncertainty.

Perceived burden and family functioning among informal caregivers of individuals living with schizophrenia in Tanzania: a cross-sectional study

Background Globally, families play a critical role in providing care and support for persons living with schizophrenia. It is important to identify potentially modifiable factors that influence perceived caregiver burden in order to properly address the needs of caregivers. This is especially relevant in low-resource settings where psychiatric services are scarce and interventions could be most effective if targeted to both the individual living with schizophrenia and their caregiver. This study examines correlates of perceived burden among informal caregivers of individuals with schizophrenia in Tanzania, in particular, the association between burden and caregiver-reported family functioning. Methods This study used baseline data from an individually randomized controlled trial with 65 pairs of individuals with schizophrenia and their informal caregivers in Dar es Salaam and Mbeya, Tanzania. Caregiver burden was measured using the Burden Assessment Scale. Univariable and multivariable regression analyses were performed to determine the relationship between caregiver burden and family functioning and to explore other correlates of burden. Results Sixty-three percent of caregivers reported experiencing high burden as a result of caring for a relative with schizophrenia. Multivariable regression analyses revealed that poor family functioning and the caregiver being employed were associated with high caregiver burden, while higher levels of hopefulness in the caregiver was associated with low caregiver burden. Conclusion Caregivers who were employed, reported poor family functioning, and/or had low levels of hopefulness were more likely to perceive high caregiver burden. Future interventions aiming to reduce caregiver burden may benefit from improving family functioning and nurturing hope among caregivers of individuals living with schizophrenia. Policies and programs should be cognizant of the needs of caregivers that work in addition to providing care for a relative with schizophrenia in order to better support them.

Patient perspectives on states worse than death: A qualitative study with implications for patient-centered outcomes and values elicitation

Background: Seriously ill patients rate several health outcomes as states worse than death. It is unclear what factors underlie such valuations, and whether consideration of such states is useful when making medical decisions. Aim: We sought to (1) use qualitative approaches to identify states worse than death, (2) identify attributes common to such undesirable health states, and (3) determine how participants might use information on these states in making medical decisions. Design: Qualitative study of semi-structured interviews utilizing content analysis with constant comparison techniques. Setting, Participants: We interviewed adults age 65 or older with serious illnesses after discharge home from one of two urban, academic hospitals. Eligible patients were purposively sampled to achieve balance in gender and race. Results: Of 29 participants, 15 (52%) were female, and 15 were white (52%), with a median age of 72 (interquartile range 69, 75). Various physical, cognitive, and social impairments were identified as states worse than death. The most commonly reported attributes underlying states worse than death were perceived burden on loved ones and inability to maintain human connection. Patients believed information on states worse than death must be individualized, and were concerned their opinions could change with time and fluctuations in health status. Conclusions: Common factors underlying undesirable states suggest that for care to be patient-centered it must also be family-centered. Patients’ views on using states worse than death in decision making highlight barriers to using avoidance of such states as a quality measure, but also suggest opportunities for eliciting patients’ values.

The Mediating Role of Depressive Symptoms, Hopelessness, and Perceived Burden on the Association Between Pain Intensity and Late-Life Suicide in Rural China: A Case–Control Psychological Autopsy Study

Background: Few studies have investigated the roles of psychosocial factors such as depressive symptoms and hopelessness on the relationship between pain and suicide with inconsistent results. The study aimed to analyze the impact of pain intensity on suicide death and to estimate the degree to which depressive symptoms, hopelessness, and perceived burden may explain the association in Chinese rural elderly.Methods: Using a 1:1 matched case–control design, we collected data from 242 elderly suicide cases and 242 living community controls by psychological autopsy method in rural China, including sociodemographic characteristics, pain intensity, depression, hopelessness, perceived burden, physical diseases, and social support. Conditional logistic regression was employed to assess the association between pain intensity and completed suicide. Mediation analysis using the KHB method was applied to explore the mediation effects from depressive symptoms, hopelessness, and perceived burden.Results: The result of multivariable logistic regression showed that unemployment [odds ratio (OR) = 5.06, 95% confidence interval (CI): 1.76–14.49], higher levels of hopelessness (OR = 7.72, 95% CI: 3.49–17.10), depressive symptom (OR = 15.82, 95% CI: 4.53–55.25), and severe pain (OR = 3.46, 95% CI: 1.31–9.13) were significantly associated with elevated suicide risk in older adults in rural China. Depressive symptoms, hopelessness, and perceived burden significantly mediated 43.71% of the pain–suicide association (p = 0.020), with 17.39% due to depressive symptoms, 17.63% due to hopelessness, and 8.69% due to perceived burden.Conclusions: Regular screening of pain, depressive symptoms, hopelessness, and perceived burden using simple but sensitive questions or scales for older adults with pain is vital for the prevention and early detection of suicide risk in Chinese rural areas. Moreover, the importance of pain management and psychological interventions targeted on depressive symptoms and hopelessness should be emphasized.

Understanding the Predictive Factors that Influence the Perceived Burden of Dementia Caregivers

Caregivers of individuals with dementia have increased levels of burden because of their caregiving duties which in turn results in negative effects on their physical, emotional, and mental wellbeing. Few studies have examined individual difference-based constructs such as positive and negative affect in relation to caregiver burden. Positive affect is characterized by pleasant emotions and expressions and higher levels of overall life satisfaction whereas negative affect is characterized by more pessimistic emotions and expressions and lower overall life satisfaction. Analyses were performed on dementia caregivers (n=102) using the online data collection tool MTurk Prime. The average caregiver provided 21 or more hours of care with 76.9% of caregivers living with their loved one with dementia. Significant correlations were found between caregiving burden and positive affect (r= -.31, p=.002) and negative affect (r= .56, p=&lt;.001), with higher positive affect related to lower burden and higher negative affect related to greater burden. Results of multiple regression models showed that positive affect (β = -.24, p = .03) and negative affect (β = .35, p = .01) were significant predictors of burden even while controlling for other constructs including types of coping, compassion towards other, and assessment of family dynamics. Understanding the relationship between these constructs will allow for more individualized interventions to be created to help reduce the level of burden that dementia caregivers experience.

Comparing the Response Burden between Paper and Web Modes in Establishment Surveys

Previous research is inconclusive regarding the effects of paper and web surveys on response burdens. We conducted an establishment survey with random assignment to paper and web modes to examine this issue. We compare how the actual and perceived response burdens differ when respondents complete a survey in the paper mode, in the web mode and when they are allowed to choose between the two modes. Our results show that in the web mode, respondents have a lower estimated time to complete the questionnaire, while we do not find differences between paper and the web on the perceived response time and perceived burden. Even though the response burden in the web mode is lower, our study finds no evidence of an increased response burden when moving an establishment survey from paper to the web.

Family Caregivers' Feelings of Preparedness for the Transition to End-Of-Life Caregiving

Family caregivers are vulnerable to emotional, psychological, physical, and financial stress during their care receiver’s end-of-life (EOL), and often do not have the knowledge or skills to provide the care needed at EOL. Yet, few studies have examined how prepared caregivers feel for making the transition to EOL care. The purpose of this exploratory study was to investigate how family caregivers perceive their preparedness for the transition to providing EOL care, and factors that may be associated with feelings of preparedness. Family caregivers (N = 252) providing care to an adult family member for more than six months were recruited to complete an online, self-report survey. An exploratory factor analysis was conducted to break down the construct of caregiver preparedness. One-way ANOVAs and a multiple regression were conducted to examine factors associated with preparedness. Most caregivers feel less prepared for the transition to EOL care (M = 2.67, SD = 1.17) than for general caregiving responsibilities (M = 3.42, SD = 0.90). Factors associated with preparedness for EOL caregiving included the familial relationship between the family caregiver and care receiver, hours per week providing care, perceived burden of caregiving, and family conversations completed about advance care planning, legal and financial matters, and EOL wishes. Future studies should explore how to help family caregivers recognize the importance of seeking support from family members and community services and discussing EOL care wishes and plans with aging family members so they can provide effective care and protect their own well-being.

Response Burden and Data Quality in Business Surveys

Response burden has long been a concern for data producers. In this article, we investigate the relationship between some measures of actual and perceived burden and we provide empirical evidence of their association with data quality. We draw on two business surveys conducted by Banca d’Italia since 1970, which provide a very rich and unique source of information. We find evidence that the perceived burden is affected by actual burden but the latter is not the only driver. Our results also show a clear link between a respondent’s perceived effort and the probability of not answering some important questions (such as those relating to expectations of future investments and turnover) or of dropping out of the survey. On the contrary, we do not find significant effects on the quality of answers to quantitative questions such as business turnover and investments. Overall, these findings have implications for data producers that should target the perceived burden, besides the actual burden, to increase data quality.