Experiences of bereaved family caregivers with shared decision making in palliative cancer treatment: a qualitative interview study.

BACKGROUND: Patients with incurable cancer face complex medical decisions. Their family caregivers play a prominent role in shared decision making processes, but we lack insights into their experiences. In this study, we explored how bereaved family caregivers experienced the shared decision making process. METHODS: We performed a qualitative interview study with in-depth interviews analysed with inductive content analysis. We used a purposive sample of bereaved family caregivers (n = 16) of patients with cancer treated in a tertiary university hospital in the Netherlands. RESULTS: Four themes were identified: 1. scenarios of decision making, 2. future death of the patient 3. factors influencing choices when making a treatment decision, and 4. preconditions for the decision making process. Most family caregivers deferred decisions to the patient or physician. Talking about the patient's future death was not preferred by all family caregivers. All family caregivers reported life prolongation as a significant motivator for treatment, while the quality of life was rarely mentioned. A respectful relationship, close involvement, and open communication with healthcare professionals in the palliative setting were valued by many interviewees. Family caregivers' experiences and needs seemed to be overlooked during medical encounters. CONCLUSIONS: Family caregivers of deceased patients with cancer mentioned life prolongation, and not quality of life, as the most important treatment aim. They highly valued interactions with the medical oncologist and being involved in the conversations. We advise medical oncologists to take more effort to involve the family caregiver, and more explicitly address quality of life in the consultations.

A cross-sectional study in young adults with psoriasis: potential determining factors in quality of life, life course and work productivity.

BACKGROUND: Psoriasis can have a substantial impact on health-related quality of life (HRQoL), life course, and work productivity. Young adulthood is a critical, sensitive period of development that includes major life changing decisions. The impact of psoriasis on this vulnerable population is yet unknown. OBJECTIVES: To assess QoL, life course, and work productivity in young adults with psoriasis and identify characteristics influencing these patient-reported outcomes (PRO). METHODS: An explorative, cross-sectional study was performed in psoriasis patients aged 18-30 years. Individuals completed a set of questionnaires regarding their health status (DLQI, SF-36, EQ-5D), achievement of developmental milestones (COLQ), and work productivity (WPAI-PSO, PRODISQ). RESULTS: Seventy-five patients (22 males, 53 females; median age [IQR], 21.0 [8.0]). Median PASI and BSA, respectively, were 4.4 [4.9] and 4.5 [8.4]. Young adults experienced feelings of embarrassment, impairments in physical health and work productivity, and difficulties in social development. Patients with more severe psoriasis, longer disease duration, higher body mass index (BMI), female patients and patients closer to their thirties tended to be more affected. CONCLUSION: In the young adult psoriasis population, substantial QoL impairments were found. Female patients, patients with high BMI, or long disease duration in particular tended to experience more difficulties. These exploratory findings indicate the need for further studies in young adults to detect potential clinical predictors for severe HRQoL impairments.

Nail Involvement as a Predictor of Disease Severity in Paediatric Psoriasis: Follow-up Data from the Dutch ChildCAPTURE Registry.

Little is known about the relationship between nail psoriasis and psoriasis severity in children, and there has been no longitudinal assessment of psoriasis severity related to nail psoriasis. The aim of this study was to assess whether nail psoriasis could serve as a predictor for a more severe disease course. De-identified data were obtained from the ChildCAPTURE registry, a daily clinical practice cohort of children with psoriasis, from September 2008 to November 2015. Cross-sectional analyses were performed at baseline. Longitudinal data until 2-year follow-up were analysed by linear mixed models. Nail psoriasis was present in 19.0% of all 343 patients at baseline and cross-sectionally associated with higher Psoriasis Area and Severity Index (PASI) (p = 0.033). Longitudinal analysis demonstrated higher PASI (p <0.001) during 2-year follow-up in patients with nail involvement at baseline. These findings suggest that nail psoriasis is a potential clinical predictor for more severe disease course over time in paediatric psoriasis.

Food allergen sensitization pattern in adults in relation to severity of atopic dermatitis.

BACKGROUND: Limited data are available on the frequency of IgE mediated food sensitization and food allergy (FA) in adults with atopic dermatitis (AD). OBJECTIVE: We investigated the pattern of food sensitization in adults with AD in relation to AD severity using multiplexed allergen microarray. METHODS: 211 adult patients referred between January 2010-July 2011 for evaluation of AD were unselectively included. Severity of AD was determined by therapy intensity, SASSAD-skin-score and sTARC levels. Allergen specific sIgE levels were measured by ImmunoCAP ISAC® microarray. FA was defined as convincing history taken by physician and sensitization to the corresponding allergen. RESULTS: Sensitization to food was found in 74.4% of the AD patients, 54% had a positive history of FA and 20.4% asymptomatic sensitization. There was no association between severity of AD and frequency of food sensitization or history of FA.Sensitization to PR-10 related food allergens occurred most frequently (63.5%) and was independent from AD severity. Correspondingly, pollen-food syndrome accounted for most of the FA, being also independent from AD severity. Of all plant food allergens only sensitization to nAra h 1 was significantly more frequent in patients with severe AD. In the total group 75 (35.5%) patients with AD showed sensitization to any animal food allergen. The percentage was significantly higher in patients with severe AD (51.4%) compared to patients with mild/moderate AD (27.7%). Sensitization to cow's milk allergens, in particular to nBos d lactoferrin, was more frequent in severe AD patients. CONCLUSION: AD was frequently associated with food sensitization. The percentage of sensitization to animal food allergens was significantly higher in severe AD patients.