BACKGROUND:Cancer not only affects patients but also their caregivers. The objective of the current study was to assess the unmet needs of cancer caregivers and to identify possible predictors of their supportive care needs. METHODS: In a cross-sectional survey, 188 dyads of patients diagnosed with lung, urological, or gastrointestinal cancer and their primary caregivers were recruited. Caregivers were asked to complete the Supportive Care Needs Survey self-report questionnaire (for partners and caregivers); patients completed the corresponding questionnaire. Both groups provided information regarding their distress (National Comprehensive Cancer Network Distress Thermometer), anxiety, and depression (Patient Health Questionnaire-4). Clinical characteristics were obtained from medical records. RESULTS: The mean age of the caregivers was 57.8 years. Approximately 72.3% were female. Patients had an average age of 62.5 years, with 33.0% being male. Caregivers were more distressed (P<.01) and exhibited higher anxiety scores (P<.01) compared with patients. Approximately 14.4% of caregivers reported no unmet need and 43.6% had at least 10 needs that were unmet. Main caregiver concerns were regarding health care service and information needs followed by emotional and psychological needs. To some degree, unmet needs in patients and caregivers' anxiety predicted unmet caregiver needs. Sociodemographic and clinical variables were not found to be significant predictors. CONCLUSIONS: A substantial percentage of caregivers have unmet needs for support, mainly with regard to fears concerning the patient's condition, receiving disease-related information, and emotional support for themselves. Prediction of unmet needs in caregivers from other clinical and psychological variables was rather poor. Therefore, by means of the frequency and disparity of caregivers unmet needs, they should be systematically assessed to direct specific offers. Cancer 2015;121:1513-9.

This study aimed for psychometric validation of the German version of the Supportive Care Needs Survey for Partners and Caregivers (SCNS-P&C-G). In- and outpatients with lung, urological and gastrointestinal cancer at Heidelberg University Hospital in Germany and in each case one relevant caregiver were asked to complete a set of questionnaires assessing their unmet needs together with distress, depression, anxiety and caregiver strain. In addition, medical data of the patients were collected. Fully completed questionnaires were received from 188 pairs of patients and their caregivers. Using exploratory factor analysis, four domains of unmet needs were identified with an appropriate variance explanation (58.7%) and acceptable (>0.70) internal consistencies (α = 0.95 to 0.76) for each domain. Convergent validity was found with respect to significant positive correlations (>0.40) of the SCNS-P&C-G domains with caregivers' anxiety, depression and strain. Although poorer health status of the patient indicated more unmet caregiver needs, this finding was not consistent for all need domains. Overall, associations were only moderate to weak pointing out the necessity of a separate screening for caregivers' needs. The findings of this study support that the SCNS-P&C-G is an appropriate research instrument to assess caregivers' needs on different domains throughout the disease trajectory.

Rationale: Lumacaftor/ivacaftor was approved for the treatment of patients with cystic fibrosis who are homozygous for F508del aged 2 years and older following positive results from phase three trials. However, the improvement in CFTR function associated with lumacaftor/ivacaftor has only been studied in patients over 12 years of age, while the rescue potential in younger children is unknown.Methods: In a prospective study, we aimed to evaluate the effect of lumacaftor/ivacaftor on the CFTR biomarkers sweat chloride concentration and intestinal current measurement as well as clinical outcome parameters in F508del homozygous CF patients 2–11 years before and 8–16 weeks after treatment initiation.Results: A total of 13 children with CF homozygous for F508del aged 2–11 years were enrolled and 12 patients were analyzed. Lumacaftor/ivacaftor treatment reduced sweat chloride concentration by 26.8 mmol/L (p = 0.0006) and showed a mean improvement in CFTR activity, as assessed by intestinal current measurement in the rectal epithelium, of 30.5% compared to normal (p = 0.0015), exceeding previous findings of 17.7% of normal in CF patients homozygous for F508del aged 12 years and older.Conclusion: Lumacaftor/ivacaftor partially restores F508del CFTR function in children with CF who are homozygous for F508del, aged 2–11 years, to a level of CFTR activity seen in patients with CFTR variants with residual function. These results are consistent with the partial short-term improvement in clinical parameters.