Acceptability and usefulness of the EORTC 'Write In three Symptoms/Problems' (WISP): a brief open-ended instrument for symptom assessment in cancer patients.

BACKGROUND: The use of open-ended questions supplementing static questionnaires with closed questions may facilitate the recognition of symptoms and toxicities. The open-ended 'Write In three Symptoms/Problems (WISP)' instrument permits patients to report additional symptoms/problems not covered by selected EORTC questionnaires. We evaluated the acceptability and usefulness of WISP with cancer patients receiving active and palliative care/treatment in Austria, Chile, France, Jordan, the Netherlands, Norway, Spain and the United Kingdom. METHODS: We conducted a literature search on validated instruments for cancer patients including open-ended questions and analyzing their responses. WISP was translated into eight languages and pilot tested. WISP translations were pre-tested together with EORTC QLQ-C30, QLQ-C15-PAL and relevant modules, followed by patient interviews to evaluate their understanding about WISP. Proportions were used to summarize patient responses obtained from interviews and WISP. RESULTS: From the seven instruments identified in the literature, only the free text collected from the PRO-CTAE has been analyzed previously. In our study, 161 cancer patients participated in the pre-testing and interviews (50% in active treatment). Qualitative interviews showed high acceptability of WISP. Among the 295 symptoms/problems reported using WISP, skin problems, sore mouth and bleeding were more prevalent in patients in active treatment, whereas numbness/tingling, dry mouth and existential problems were more prevalent in patients in palliative care/treatment. CONCLUSIONS: The EORTC WISP instrument was found to be acceptable and useful for symptom assessment in cancer patients. WISP improves the identification of symptoms/problems not assessed by cancer-generic questionnaires and therefore, we recommend its use alongside the EORTC questionnaires.

Shared decision-making in palliative cancer care: A systematic review and metasynthesis.

BACKGROUND: Shared decision-making is a key element of person-centred care and promoted as the favoured model in preference-sensitive decision-making. Limitations to implementation have been observed, and barriers and limitations, both generally and in the palliative setting, have been highlighted. More knowledge about the process of shared decision-making in palliative cancer care would assist in addressing these limitations. AIM: To identify and synthesise qualitative data on how people with cancer, informal carers and healthcare professionals experience and perceive shared decision-making in palliative cancer care. DESIGN: A systematic review and metasynthesis of qualitative studies. We analysed data using inductive thematic analysis. DATA SOURCES: We searched five electronic databases (MEDLINE, EMBASE, PsycINFO, CINAHL and Scopus) from inception until June 2023, supplemented by backward searches. RESULTS: We identified and included 23 studies, reported in 26 papers. Our analysis produced four analytical themes; (1) Overwhelming situation of 'no choice', (2) Processes vary depending on the timings and nature of the decisions involved, (3) Patient-physician dyad is central to decision-making, with surrounding support and (4) Level of involvement depends on interactions between individuals and systems. CONCLUSION: Shared decision-making in palliative cancer care is a complex process of many decisions in a challenging, multifaceted and evolving situation where equipoise and choice are limited. Implications for practice: Implementing shared decision-making in clinical practice requires (1) clarifying conceptual confusion, (2) including members of the interprofessional team in the shared decision-making process and (3) adapting the approach to the ambiguous, existential situations which arise in palliative cancer care.

The relationship between gender, psychosocial factors, pain, health literacy and health-related quality of life in parents of Norwegian adolescents one year into the COVID-19 pandemic.

BACKGROUND: Stress impacts healthy behaviours and may influence life and health-related quality of life (HRQOL). A stressful event occurred when the COVID-19 pandemic hit in March 2020. The present study aims to explore possible gender differences in stress, psychosocial factors (self-efficacy, self-esteem, loneliness), pain, HL, and HRQOL in parents of adolescents one year into the COVID-19 pandemic, and to explore possible associations between gender, demographic and psychosocial factors, pain, HL, and HRQOL. METHODS: Parents of adolescents aged 16-17 took part in the study from January to February 2021, when the COVID-19 pandemic was ongoing. Data on socio-demographics, stress, self-efficacy, self-esteem, pain, HL, loneliness, and HRQOL were collected. HRQOL was assessed using RAND-36. RESULTS: Among the 320 parents from the general population, the mean age was 47.6 (standard deviation (SD) = 4.6) years, 81% were mothers, 79% were married or cohabiting, 81% had a university degree, and the majority worked full time (78%) or part time (13%). The average pain score was low, 0.48 (95% CI [0.43-0.54]). However, 50% of the parents reported persistent pain and more mothers reported persistent pain compared to fathers (53% vs. 37%). The parents' mean (SD) score for RAND-36 was 52.1 (95% CI [51.2-53.0]) for the physical component summary (PCS) score and 51.0 (95% CI [50.0-52.1]) for the mental component summary (MCS) score. Mothers reported significantly lower scores for all the eight RAND-36 domains and the PCS and MCS scores. Adjusting for gender, age, living condition, education, pain, HL, self-efficacy and loneliness, we revealed no associations between stress and RAND-36-PCS. University education of four years or more was positively associated (B = 3.29, 95% CI: [0.78-5.80]) with RAND-36-PCS, while persistent pain was negatively associated (B = -7.13, CI: [-9.20- -5.06]). We identified a strong negative association between RAND-36-MCS and stress (B = -43.11, CI: [-48.83- -37.38]) and a positive association with older age (B = 0.21, CI: [ 0.04, 0.39)]. CONCLUSION: One year into the COVID-19 pandemic, we identified a strong negative association between stress and mental HRQOL, while pain was strongly negatively associated with physical HRQOL.

Emerging priorities and concerns in the wake of the COVID-19 pandemic: qualitative and quantitative findings from a United States national survey.

Purpose: The present study examines how the coronavirus disease 2019 (COVID-19) experience affected values and priorities. Methods: This cross-sectional study collected data between January and April 2023, from 1,197 individuals who are chronically ill or part of a general population sample. Using open-ended prompts and closed-ended questions, we investigated individuals' perceptions about COVID-19-induced changes in what quality of life means to them, what and who are important, life focus, and changes in norms and stressors. Data analyses included content and psychometric analysis, leading to latent profile analysis (LPA) to characterize distinct groups, and analysis of variance and chi-squared to compare profile groups' demographic characteristics. Results: About 75% of the study sample noted changes in values and/or priorities, particularly in the greater prominence of family and friends. LPA yielded a four-profile model that fit the data well. Profile 1 (Index group; 64% of the sample) had relatively average scores on all indicators. Profile 2 (COVID-Specific Health & Resignation to Isolation Attributable to COVID-19; 5%) represented COVID-19-specific preventive health behaviors along with noting the requisite isolation and disengagement entailed in the social distancing necessary for COVID-19 prevention. Profile 3 (High Stress, Low Trust; 25%) represented high multi-domain stress, with the most elevated scores both on focusing on being true to themselves and perceiving people to be increasingly uncivil. Profile 4 (Active in the World, Low Trust; 6%) was focused on returning to work and finding greater meaning in their activities. These groups differed on race, marital status, difficulty paying bills, employment status, number of times they reported having had COVID-19, number of COVID-19 boosters received, whether they had Long COVID, age, BMI, and number of comorbidities. Conclusion: Three years after the beginning of the worldwide COVID-19 pandemic, its subjective impact is notable on most study participants' conceptualization of quality of life, priorities, perspectives on social norms, and perceived stressors. The four profile groups reflected distinct ways of dealing with the long-term effects of COVID-19.

Pain in Adolescence: Maternal and Paternal Factors Affecting Adolescents' Pain in Norway-A Cross-Sectional Study.

BACKGROUND: Pain in adolescence is considered a worldwide concern. Adolescents' pain affects family functioning. However, bidirectional associations should be considered as parental determinates such as pain, stress, and sociodemographic factors are also shown to influence pain in adolescence. OBJECTIVES: This study explored the associations between maternal and paternal sociodemographic factors, pain, and stress and adolescents' pain, and stress on adolescents' pain. METHODS: In total, 508 school-based Norwegian adolescents with a corresponding parent were included. All adolescents completed an electronic survey during school hours, and their respective parents responded electronically. The survey included sociodemographic data, the Perceived Stress Questionnaire, and the Brief Pain Inventory. RESULTS: Herein, 385 adolescents reported an average pain of 2.1 (SD, 1.9), and 308 of the participating parents reported an average pain of 1.6 (SD, 1.8). Regressions stratified by parental gender revealed nonsignificant associations in fathers' study variables predicting adolescents' pain. However, having the highest maternal educational level (p ≤ 0.01) and working part-time (p ≤ 0.01) were associated with lower pain in adolescents. CONCLUSIONS: The findings of this study demonstrated that sociodemographic factors such as high educational status in mothers and mothers working part-time were associated with lower pain in Norwegian adolescents. These findings highlight the importance of a holistic approach to pain management in adolescence.