Revisiting the use of the EORTC QLQ-STO22 to assess health-related quality of life of patients with gastric cancer: incorporating updated treatment options and cross-cultural perspectives.

BACKGROUND: The EORTC QLQ-STO22 (QLQ-STO22) is a firmly established and validated measure of health-related quality of life (HRQoL) for people with gastric cancer (GC), developed over two decades ago. Since then there have been dramatic changes in treatment options for GC. Also, East Asian patients were not involved in the development of QLQ-STO22, where GC is most prevalent and the QLQ-STO22 is widely used. A review with appropriate updating of the measure was planned. This study aims to capture HRQoL issues associated with new treatments and the perspectives of patients and health care professionals (HCPs) from different cultural backgrounds, including East Asia. METHODS: A systematic literature review and open-ended interviews were preformed to identify potential new HRQoL issues relating to GC. This was followed by structured interviews where HCPs and patients reviewed the QLQ-STO22 alongside new issues regarding relevance, importance, and acceptability. RESULTS: The review of 267 publications and interviews with 104 patients and 18 HCPs (48 and 9 from East Asia, respectively) generated a list of 58 new issues. Three of these relating to eating small amounts, flatulence, and neuropathy were recommended for inclusion in an updated version of the QLQ-STO22 and covered by five additional questions. CONCLUSIONS: This study supports the content validity of the QLQ-STO22, suggesting its continued relevance to patients with GC, including those from East Asia. The updated version with additional questions and linguistic changes will enhance its specificity, but further testing is required.

"No Official Help Is Available"-Experience of Parents and Children With Congenital Heart Disease During COVID-19.

INTRODUCTION: The purpose was to explore the experience, information and support needs, and decision-making of parents of children with congenital heart disease (CHD), as well as the children/young people themselves, during the COVID-19 crisis. MATERIALS AND METHODS: A survey study of parents of children with CHD, children and young people, capturing experiences, decision-making, information, and support needs during the COVID-19 crisis was conducted. The survey launched for one month (April 9, 2020) during the first infection wave in the United Kingdom and subsequent restriction of free movement under lockdown rules from March 23, 2020, until May 31, 2020. RESULTS: One hundred eighty-four parents and 36 children/young people completed the survey. Parents were more likely to worry about the virus (86.4%) than children/young people (69.4%), while (89%) parents were more vigilant for symptoms of the virus versus children/young people (69.4%). A thematic analysis of the qualitative comments covered 34 subthemes, forming eight overarching themes: Virus-(1) risk of infection; (2)information, guidance, and advice; (3) change in health care provision; and (4) fears and anxieties, and lockdown and isolation-(5) psychological and social impact, (6) keeping safe under lockdown, (7) provisions and dependence on others, and (8) employment and income. CONCLUSIONS: There was widespread concern over the virus especially among parents. Parents and children/young people, however, were frustrated with the lack of specific and pediatric-focused information and guidance, expressing disappointment with the adult-centric information available. Parents also felt alone, especially with their concerns around the implications of cardiac service suspension and the implication for their child's health. In order to better support children and their families, resources need to be developed to address families' and children/young people's concerns for their health during this pandemic.

Minimally important differences for interpreting the EORTC QLQ-C30 in patients with advanced colorectal cancer treated with chemotherapy.

AIM: The European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) assesses the health-related quality of life of patients in cancer trials. There are currently no minimally important difference (MID) guidelines for the EORTC QLQ-C30 for colorectal cancer (CRC). This study aims to estimate MIDs for the EORTC QLQ-C30 scales in patients with advanced CRC treated with chemotherapy and enrolled in clinical trials. METHOD: The data were obtained from three published EORTC trials that treated CRC patients using chemotherapy. Potential anchors were selected from clinical variables based on their correlation with EORTC QLQ-C30 scales. Anchor-based MIDs for within-group change and between-group change were estimated via the mean change method and linear regression, respectively, and summarized using weighted correlation. Distribution-based MIDs were also examined. RESULTS: Anchor-based MIDs were determined for deterioration in 8 of the 14 EORTC QLQ-C30 scales and in 9 scales for improvement, and varied by scale, direction of change and anchor. MIDs for improvement (deterioration) ranged from 6 to 18 (-11 to -5) points for within-group change and 5 to 15 (-10 to -4) for between-group change. Summarized MIDs (in absolute values) per scale mostly ranged from 5 to 10 points. CONCLUSIONS: These findings have clinical relevance for the interpretation of treatment efficacy and the design of clinical trials by informing sample size requirements.

Supportive care needs of patients following treatment for colorectal cancer: risk factors for unmet needs and the association between unmet needs and health-related quality of life-results from the ColoREctal Wellbeing (CREW) study.

PURPOSE: To investigate unmet needs of patients with colorectal cancer (CRC) at the end of treatment and whether unmet needs improve over time. Identify predictors of need following treatment and whether unmet need is associated with worse health-related quality of life (HRQoL). METHODS: As part of the UK ColoREctal Wellbeing (CREW) cohort study, patients treated for CRC completed the Supportive Care Needs Survey Short Form-34 (SCNS SF-34) 15 and 24 months following surgery, along with questionnaires measuring HRQoL, wellbeing, life events, social support, and confidence to manage their cancer before surgery, 3, 9, 15, and 24 months post-surgery. RESULTS: The SCNS SF-34 was completed by 526 patients at 15 months and 510 patients at 24 months. About one-quarter of patients had at least one moderate or severe unmet need at both time points. Psychological and physical unmet needs were the most common and did not improve over time. Over 60% of patients who reported 5 or more moderate or severe unmet needs at 15 months experienced the same level of unmet need at 24 months. HRQoL at the beginning of treatment predicted unmet needs at the end of treatment. Unmet needs, specifically physical, psychological, and health system and information needs, were associated with poorer health and HRQoL at the end of treatment. CONCLUSIONS: Unmet needs persist over time and are associated with HRQoL. Evaluation of HRQoL at the start of treatment would help inform the identification of vulnerable patients. Assessment and care planning in response to unmet needs should be integrated into person-centred care. IMPLICATIONS FOR CANCER SURVIVORS: Early identification of CRC patients at risk of unmet needs will help infrom personalised survivorship care plans. The implementation of personalised and tailored services are likely to confer HRQoL gains.

Positivity in illness: self-delusion or existential growth?

OBJECTIVES: This study investigated the relationship between a measure of positivity in illness, the Silver Lining Questionnaire (SLQ), and measures of personality and spirituality/religious beliefs as a way of determining whether positivity in illness is a delusion or existential growth. METHOD: This is a cross-sectional study comparing response to the SLQ, to the Eysenck Personality Questionnaire (EPQ-R), breathlessness, illness type, and spiritual and religious beliefs in a final total sample of 194 respiratory outpatients. RESULTS: The SLQ was associated positively with extraversion (r =.16, p<.05), unrelated to neuroticism (r =.11, n.s.) and repression (r =.10, n.s.) and was positively associated with spiritual and religious beliefs, F(2; 187) = 7.12, p < 001, as predicted by the existential growth but not the delusion interpretation. There was no relationship between positivity and age, r(194) =.09, n.s., or between positivity and gender t(192) = -1.27, n.s., and nor were there relationships with type of illness, F(4, 188) = 2.17, n.s., or breathlessness, F (5, 173) = 0.42, n.s. CONCLUSIONS: The results suggest that positivity in illness is associated with existential growth, though the cross-sectional nature of the study precludes a conclusion of causal direction. The non-significant correlation between the SLQ and neuroticism is in the opposite direction predicted by the delusion explanation, but the non-significant relationship between the SLQ and repression is in the predicted direction. We cannot rule out the possibility that some positivity is delusion.

A comparison of three disease-specific and two generic health-status measures to evaluate the outcome of pulmonary rehabilitation in COPD.

The use of health status as an outcome measure is becoming more widespread in pulmonary rehabilitation. There are a number of health status measures but the choice remains uncertain. Three disease specific measures and two generic measures of health status were employed to observe their relative sensitivity to a 7-week course of pulmonary rehabilitation. Patients with stable chronic obstructive pulmonary disease (COPD) were recruited into a rehabilitation programme. They completed a shuttle-walking test and three disease-specific questionnaires: the Chronic Respiratory Questionnaire (CRQ), the St. George's Hospital Respiratory Questionnaire (SGRQ) and the Breathing Problems Questionnaire (BPQ). Patients also completed two generic questionnaires: a global quality-of-life scale and an activity checklist. Ninety-seven patients [58 male mean (SD) age 67 (8.7) years] completed the course over a 12-month period. The mean pre-rehabilitation (SD) FEV1 was 1.06 (0.59) l. The shuttle-walking test and the treadmill-endurance test increased significantly after rehabilitation (P<0.001). All three disease-specific questionnaires improved significantly (the CRQ and SGRQ improved beyond minimum clinically important difference). The global score improved significantly whilst the 'things people do' decreased. All three disease-specific measures were responsive to pulmonary rehabilitation. However the operator-led CRQ appears to be the most sensitive short-term outcome measure.

Development of a shortened version of the Breathing Problems Questionnaire suitable for use in a pulmonary rehabilitation clinic: a purpose-specific, disease-specific questionnaire.

One hundred and thirty-eight chronic obstructive pulmonary disease (COPD) patients completed the Breathing Problems Questionnaire (BPQ) before and after a comprehensive programme of rehabilitation. Examination of the changes on individual items showed improvement on 22 items, of which four items were significant at p < 0.05 and deterioration on nine items, of which two were significant at p < 0.01. All deteriorating items were consistent with lifestyle adaptations encouraged as part of the rehabilitation programme. We examined the psychometric properties of a reduced ten item version of the BPQ limited to the items most sensitive to change. We recommend the purpose-specific, disease-specific COPD scale for measuring change in pulmonary rehabilitation assessment in contrast to the longer 33 item questionnaire, which, however, may be more useful for cross-sectional assessment.

Development of a new type of global quality of life scale, and comparison of performance and preference for 12 global scales.

We constructed a new type of global quality of life (QOL) scale deriving from the Borg symptom scales and compared four versions of this new type of scale (H scale) with four category rating (CR) scales and four visual analogue (VA) scales. Mean self-ratings and mean scenario ratings on different scales showed small but significant differences, and intercorrelations were higher amongst the H scales than amongst the CR or VA scales. H scales were on average most preferred (by undergraduates and elderly subjects) followed by CR and lastly VA scales in terms of case of use and perceived accuracy of representation. We investigated the preferred polarity of the scales: subjects preferred 'Perfect quality of life' to be indicated by 20 or 100 (with slight preference for the latter) rather than 0. The H scales have eight additional quantifiers between the end labels and there was good agreement about the perceived magnitude of these quantifiers.