Swedish national population-based study shows an increased risk of depression among patients with Hirschsprung disease.

AIM: Hirschsprung disease is usually treated during infancy. The long-term impact on mental health has not been well studied. The aim of this study was to assess the risk for depressive disorders in individuals with Hirschsprung disease. METHODS: This was a nationwide, population-based cohort study. The study exposure was Hirschsprung disease and the study outcome was depression. The exposed cohort included all individuals with Hirschsprung disease, registered in the Swedish National Patient Register between 1964 and 2013 and the unexposed cohort included ten age- and sex-matched controls per patient. The diagnosis of depression was confirmed by diagnosis in the Swedish National Patient Register. RESULTS: The cohort included 739 (76.5% males) individuals with Hirschsprung disease and 7390 (76.5% males) controls. Among the patients with Hirschsprung disease, 35 (4.7%) of the patients had had a depressive disorder and 187 (2.5%) of controls, hazard ratio 1.98, 95% confidence interval 1.38-2.84. The mean age at diagnosis of first depression was 21.9 years (SD ± 7) in Hirschsprung disease patients and 23.4 years (SD ± 7), p = 0.236 in the unexposed group. There were no significant gender differences. CONCLUSION: We found an increased risk of having depressive disorders among individuals with Hirschsprung disease compared to controls.

Increased Risk of Inflammatory Bowel Disease in a Population-based Cohort Study of Patients With Hirschsprung Disease.

OBJECTIVES: Hirschsprung disease (HSCR) has previously been associated with inflammatory bowel disease (IBD). There are no data to show how common this association is. The aim of the present study was to assess the risk of IBD in individuals with HSCR in a population-based cohort. METHODS: This was a nationwide, population-based cohort study. The study exposure was HSCR and the study outcome was IBD. The cohort included all individuals with HSCR registered in the Swedish National Patient Register between 1964 and 2013 and 10 age- and sex-matched controls per patient, randomly selected from the Swedish Population Register. Individuals with IBD were identified in the Swedish National Patient Register. Data were validated by checking for relevant surgical procedures, and, or prescription of drugs for IBD registered in the Swedish Drug Registry. RESULTS: The cohort comprised 739 individuals with HSCR (565 boys) and 7390 controls (5650 boys). The median age at diagnosis of IBD was not different between the groups; 19 years (5-34) versus 21 years (7-37), P = 0.21. Twenty of the 739 individuals with HSCR and 41 of the 7390 controls had IBD, odds ratio 4.99, and 95% confidence interval 2.85 to 8.45. In the exposed group, 15 individuals had Crohn disease and 5 ulcerative colitis at their latest admission compared to 18 individuals with Crohn disease and 23 with ulcerative colitis in the unexposed group, P = 0.030. CONCLUSION: There is an increased risk of IBD in patients with HSCR, which should be considered in clinical practice.

Reimagining care for adolescent and young adult cancer programs: Moving with the times.

Literature regarding the development of adolescent and young adult (AYA) cancer programs has been dominantly informed by pediatric centers and practitioners. However, the majority of young adults are seen and treated at adult cancer centers, in which cancer volumes afford the development of innovative supportive care services. Although the supportive care services in adult cancer centers are helpful to AYAs, some of the most prominent and distinct issues faced by AYAs are not adequately addressed through these services alone. This article describes how the AYA Program at Princess Margaret Cancer Centre has collaborated with existing supportive care services in addition to supplying its own unique services to meet the comprehensive needs of AYAs in the domains of: symptom management (sexuality and fatigue), behavior modification (return to work and exercise), and health services (advanced cancer and survivorship). These collaborations are augmented by patient education interventions and timely referrals. The objective of this article was to assist other centers in expanding existing services to address the needs of AYA patients with cancer.

Pregnancy and Cancer Treatment: Developing a Standardized Testing Policy and Procedure

Systematic gaps for pregnancy screening and testing of patients with cancer persist. Absent or inconsistent guidelines and policies are barriers to standardized practice. Awareness among oncology nurses is needed to promote safe cancer care, prevent patient harm, and uphold patient-centered care.

Development of a return-to-work planning tool for cancer survivors: Élaboration d'un outil de planification du retour au travail pour les survivants du cancer.

BACKGROUND: The ability to return to work (RTW) after a cancer diagnosis can present significant challenges for survivors and can be an important predictor of their long-term quality of life. Survivors report concerns related to disclosing their cancer diagnosis, describing ongoing late effects of cancer, and negotiating workplace accommodations. PURPOSE: This paper outlines the development of an RTW planning template (RTW-PT) designed to improve communication with stakeholders involved in the RTW process. Lessons learned throughout the process of developing the RTW-PT and implications for clinical practice are presented. KEY ISSUES: The RTW-PT assists the survivor and his or her health care provider to prioritize job demands during a graded RTW and to identify potential accommodations. The RTW-PT also helps survivors plan how they will communicate their RTW needs, particularly with employers and insurance representatives. IMPLICATIONS: The RTW-PT offers a structured approach to support communication among stakeholders involved in the RTW process and to assist survivors in negotiating workplace accommodations.

Barriers and Facilitators of Transition from Pediatric to Adult Long-Term Follow-Up Care in Childhood Cancer Survivors.

PURPOSE: Despite the risk for late effects in adult survivors of cancer in childhood or adolescence, many survivors fail to transition from pediatric to adult long-term follow-up (LTFU) care. The purpose of this study was to identify the barriers and facilitators of transition from pediatric to adult LTFU care. METHODS: In this qualitative study, 38 Canadian survivors of cancer in childhood or adolescence, currently aged 15-26 years, were interviewed using semi-structured, open-ended questions. Participants belonged to one of four groups: pre-transition (n=10), successful transition (n=11), failed to transition (n=7), and transitioned to an adult center but then dropped out of adult care (n=10). A constructivist grounded theory approach was used to analyze the interview data. This approach consisted of coding transcripts line by line to develop categories and using constant comparison to examine relationships within and across codes and categories. Interviewing continued until saturation was reached. RESULTS: Three interrelated themes were identified that affected the transition process: micro-level patient factors (e.g., due diligence, anxiety), meso-level support factors (e.g., family, friends), and macro-level system factors (e.g., appointments, communication, healthcare providers). Factors could act as facilitators to transition (e.g., family support), barriers to transition (e.g., difficulty booking appointments), or as both a barrier and a facilitator (e.g., anxiety). CONCLUSION: This study illustrates the interaction between multiple factors that facilitate and/or prevent transition from pediatric to adult LTFU cancer care. A number of recommendations are presented to address potential macro-level system barriers to successful transition.

Rasch analysis of the PedsQL: an increased understanding of the properties of a rating scale.

OBJECTIVE: Traditionally, measures have been developed using classical test theory (CTT). This study examines the psychometrics of the PedsQL 4.0 Generic Core Scales (parent report) using a modern psychometric approach (i.e., Rasch analysis) to determine if further insight regarding the behavior of the measure can be gained using a modern approach. STUDY DESIGN AND SETTING: Data from a Canadian study of 376 parents of children aged 2-17 years on active cancer treatment were analyzed using Rumm2030 software (RUMM Laboratory, Australia). RESULTS: Overall data did not fit the Rasch model and indicated important limitations in the PedsQL including disordered item thresholds, local dependency, and poor targeting. The internal consistency was higher using CTT (Cronbach's α=0.93) than Rasch (Person Separation Index=0.78). Rasch item curves showed that respondents did not discriminate between the five-point response categories and a three-point scale was easier to discriminate. CONCLUSIONS: The PedsQL is the most widely used generic measure of health-related quality of life in pediatrics. The use of Rasch allows detailed item-level evaluation and assists in identifying limitations of measures that could then be further explored. Studies are needed in other populations to better understand the behavior of the PedsQL from a modern psychometric perspective.

Psychological factors impacting transition from paediatric to adult care by childhood cancer survivors.

PURPOSE: Childhood cancer survivors require life-long care focused on the specific late effects that may arise from their cancer and its treatment. In many centers, survivors are required to transition from follow-up care in a paediatric cancer center, to care provided in an adult care setting. The purpose of this study was to identify the psychological factors involved in this transition to adult care long-term follow-up clinics. METHODS: Qualitative interviews were conducted with ten paediatric survivors still in paediatric care, as well as 28 adult survivors of whom 11 had transitioned successfully to adult care (attended three long-term follow-up (LTFU) appointments consecutively); ten who failed to transition (attended at least one LTFU appointment as an adult, but were inconsistent with subsequent attendance); and seven who had never transitioned (did not attend any LTFU care as an adult). Line-by-line coding was used to establish categories and themes. Constant comparison was used to examine relationships within and across codes and categories. RESULTS: Two overall categories and four subthemes were identified: (1) Identification with being a cancer survivor included the subthemes of 'cancer identity' and 'cancer a thing of the past' and; (2) Emotional components included the subthemes of 'fear and anxiety' and 'gratitude and gaining perspective'. The analysis revealed that the same factor could act as either a motivator or a hindrance to successful transition in different survivors (e.g., fear of recurrence of cancer might be a barrier or a facilitator depending on the survivor's life experience). CONCLUSIONS: Psychological factors are an important consideration when preparing cancer survivors for transition to adult long-term follow-up care. Identifying and addressing the individual psychological needs of childhood cancer survivors may improve the likelihood of their successful transition to adult care.