Acute hepatic porphyria and cancer risk: a nationwide cohort study.

BACKGROUND: Acute hepatic porphyria (AHP) is considered to be a risk factor for primary liver cancer (PLC), but varying risk estimates have been published. OBJECTIVES: Our aim was to investigate the risk of PLC and other cancers in persons with AHP using a nationwide cohort design. Given that greater numbers of women than men tend to have manifest and more severe AHP, a further aim was to investigate sex differences in this risk. METHODS: The study sample consisted of all Norwegian residents aged 18 years or older during the period 2000-2011. Persons with AHP (n = 251) were identified through the Norwegian Porphyria Centre, and patients with a cancer diagnosis were identified by linkage to the Cancer Registry of Norway. RESULTS: For persons with AHP, the annual incidence rate of PLC was 0.35%. PLC risk was substantially higher for individuals with an AHP diagnosis compared to the reference population [adjusted hazard ratio (aHR) 108, 95% confidence interval (CI) 56-207]. In a meta-analysis of published studies on PLC and AHP, including ours, women had a higher risk than men. In addition, our results suggested that persons with AHP may have increased risks of kidney (aHR 7.4, 95% CI 2.4-23.1) and endometrial cancers (aHR 6.2, 95% CI 2.0-19.3). CONCLUSIONS: Our findings confirmed a substantially higher risk of PLC associated with AHP compared to the general population. In a meta-analysis, the risk was shown to be greater for women than men. The novel findings of a moderate to substantial association between AHP and kidney and endometrial cancers should be investigated further.

Impact of a novel nurse-led prechemotherapy education intervention (ChemoEd) on patient distress, symptom burden, and treatment-related information and support needs: results from a randomised, controlled trial.

BACKGROUND: High levels of distress and need for self-care information by patients commencing chemotherapy suggest that current prechemotherapy education is suboptimal. We conducted a randomised, controlled trial of a prechemotherapy education intervention (ChemoEd) to assess impact on patient distress, treatment-related concerns, and the prevalence and severity of and bother caused by six chemotherapy side-effects. PATIENTS AND METHODS: One hundred and ninety-two breast, gastrointestinal, and haematologic cancer patients were recruited before the trial closing prematurely (original target 352). ChemoEd patients received a DVD, question-prompt list, self-care information, an education consultation≥24 h before first treatment (intervention 1), telephone follow-up 48 h after first treatment (intervention 2), and a face-to-face review immediately before second treatment (intervention 3). Patient outcomes were measured at baseline (T1: pre-education) and immediately preceding treatment cycles 1 (T2) and 3 (T3). RESULTS: ChemoEd did not significantly reduce patient distress. However, a significant decrease in sensory/psychological (P=0.027) and procedural (P=0.03) concerns, as well as prevalence and severity of and bother due to vomiting (all P=0.001), were observed at T3. In addition, subgroup analysis of patients with elevated distress at T1 indicated a significant decrease (P=0.035) at T2 but not at T3 (P=0.055) in ChemoEd patients. CONCLUSIONS: ChemoEd holds promise to improve patient treatment-related concerns and some physical/psychological outcomes; however, further research is required on more diverse patient populations to ensure generalisability.

An audiovisual information resource to assist in the transition from completion of potentially curative treatment for cancer through to survivorship: a systematic development process.

INTRODUCTION: Improvements in cancer screening and treatment are resulting in an increase in the number of cancer patients completing treatment who are apparently cured of their disease. There are few information resources for people at this juncture. An evidence-based DVD was developed for individuals at this stage with information about experiences encountered as a cancer survivor (CS). METHODS: Focus groups and a literature review were conducted to establish the DVD content. The DVD was developed in conjunction with a multidisciplinary committee and according to a recommended best-practice framework. Interviews with CS and evidence-based commentary by health professionals (HP) made up the DVD. The final phase of development was to evaluate the usefulness and acceptability of the DVD with CS and HP. RESULTS: A 52-min DVD with nine chapters was developed featuring 13 CS, a medical oncologist and a clinical psychologist. Thirty-two CS and 116 HP evaluated the DVD. Both groups considered the DVD was informative (CS 97%; HP 98%), easy to understand (CS and HP 100%), reassuring (CS 91%; HP 92%), relevant to their circumstances (CS 68%; HP 97%), did not contain too much information (CS 75%; HP 71%) and was not distressing to watch (CS 84%; HP 80%). DISCUSSION: The DVD was well accepted by both CS and HP. Modifications were made as a result of the evaluations, the most significant of which was re-filming of commentary by the two HP. Future research should evaluate the effectiveness of the DVD in controlled trials with outcomes such as quality of long term health, symptom burden and cancer specific distress. IMPLICATIONS FOR CANCER SURVIVORS: The DVD is expected to be a useful resource for CS living beyond effective treatment for cancer.