Cecilia Olsson

Patients Treated for Hematologic Malignancies - Affected Sexuality and Health Related Quality of Life

Background: Sexuality in relation to health-related quality of life (HRQoL) is studied mostly with younger patients as participants who have undergone bone marrow transplantation and concerns fertility and/or sexual function. However, patients with hematologic malignancies such as diffuse large B-cell lymphoma, chronic lymphocytic leukemia, or acute myeloid leukemia most often are above their fifties and are treated with chemotherapy or chemoimmunotherapy. Objective: The aim was to examine how sexuality and HRQoL were affected in patients with hematologic malignancies at baseline compared with 1 month after chemotherapy or chemoimmunotherapy. Methods: Data were collected twice with a longitudinal design using the Sexual Adjustment Questionnaire and the European Organization for Research and Treatment of Cancer Quality of Life questionnaire. Results: Thirty-two patients responded. The importance of sexuality, sexual desire, and sexual ability decreased 1 month after treatment and distressing symptoms such as feelings of tiredness occurred more frequently compared with baseline. At the same time, improvement in global health status/quality of life as well as affected functions in HRQoL was reported. Conclusion: The findings are of significance for nurses in cancer care as these highlight that sexuality and HRQoL need to be considered also in older patients with hematologic malignancies when fertility issues are of less importance. Implication for Practice: To meet these patients’ needs regarding sexuality and HRQoL, the care must provide greater consistency and continuity. One way is to organize the care in a patient-centered way where patients continuously meet a nurse guided by the idea of holistic individual nursing care throughout the care trajectory.

Person-centred information to parents in paediatric oncology (the PIFBO study): A study protocol of an ongoing RCT.

BackgroundParents of children with cancer experience a demanding situation and often suffer from psychological problems such as stress. Trying to coping with the complex body of information about their child’s disease is one factor that contributes to this stress. The aim of this study is to evaluate an intervention for person-centred information to parents of children with cancer that consists of four sessions with children’s nurses trained in the intervention method.Methods/DesignThis is a multi-centre RCT with two parallel arms and a 1:1 allocation ratio. The primary outcome is illness-related parental stress. Secondary outcomes are post-traumatic stress symptoms, anxiety, depression, satisfaction with information, expected and received knowledge, and experiences with health care providers. A process evaluation is performed to describe experiences and contextual factors. Data are collected using web questionnaires or paper forms according to the parents’ preference, audio recording of the intervention sessions, and qualitative interviews with parents and the intervention nurses.DiscussionFew studies have evaluated information interventions for parents of children with cancer using large multi-centre RCTs. This intervention is designed to be performed by regular staff children’s nurses, which will facilitate implementation if the intervention proves to be effective.Trial registrationClinical trials NCT02332226 (December 11, 2014).

The Pediatric Inventory for Parents - Swedish Translation and Psychometric Testing

&NA; The Pediatric Inventory for Parents (PIP) measures parental stress related to caring for a child with an illness. However, no Swedish translation is available. Purpose: This study reports a Swedish translation of the PIP and psychometric properties of the instrument. Design and Methods: This is a descriptive/methodological paper. The PIP was translated and culturally adapted to Swedish, and comprehensibility was tested. Data were collected twice from 48 parents of children with different illnesses, and initial psychometric properties of the instrument were examined. The IES‐R (Impact of Event Scale‐Revised) was used for concurrent validity. Results: The Swedish version of the PIP demonstrated good correlations with the IES‐R, and temporal changes were similar. Endorsement frequencies and test‐retest were also satisfactory. When comparing groups of parents, the parents of children with cancer were statistically significantly more distressed, both on total score and for emotional distress and role function. Discriminative validity was demonstrated by comparing parents of children with cancer with parents of children with other diseases. Conclusions: The Swedish version of the PIP seems to be a valid and reliable instrument. However, as we used relatively small sample, for the future, we suggest further testing with larger samples. Practice Implications: Clinicians and researchers seeking to measure parental distress in chronic illness could use the Swedish version of the PIP. Highlights:The PIP measures distress in parents of chronically ill children.We present a Swedish translation and psychometric testing of the PIP.The Swedish version shows good initial validity and reliability.We recommend further testing in a larger sample.

A scoping review of trials of interventions led or delivered by cancer nurses

BACKGROUND Advances in research and technology coupled with an increased cancer incidence and prevalence have resulted in significant expansion of cancer nurse role, in order to meet the growing demands and expectations of people affected by cancer (PABC). Cancer nurses are also tasked with delivering an increasing number of complex interventions as a result of ongoing clinical trials in cancer research. However much of this innovation is undocumented, and we have little insight about the nature of novel interventions currently being designed or delivered by cancer nurses. OBJECTIVES To identify and synthesise the available evidence from clinical trials on interventions delivered or facilitated by cancer nurses. DATA SOURCES AND REVIEW METHODS A systematic review of randomised controlled trials (RCT), quasi-RCTs and controlled before and after studies (CBA) of cancer nursing interventions aimed at improving the experience and outcomes of PABC. Ten electronic databases (CENTRAL, MEDLINE, AMED, CINAHL, EMBASE, Epistemonikos, CDSR, DARE, HTA, WHO ICTRP) were searched between 01 January 2000 and 31 May 2016. No language restrictions were applied. Bibliographies of selected studies and relevant Cochrane reviews were also hand-searched. Interventions delivered by cancer nurses were classified according to the OMAHA System. Heat maps were used to highlight the volume of evidence available for different cancer groups, intervention types and stage of cancer care continuum. RESULTS The search identified 22,450 records; we screened 16,169 abstracts and considered 925 full papers, of which 214 studies (247,550 participants) were included in the evidence synthesis. The majority of studies were conducted in Europe (n = 79) and USA (n = 74). Interventions were delivered across the cancer continuum from prevention and risk reduction to survivorship, with the majority of interventions delivered during the treatment phase (n = 137). Most studies (131/214) had a teaching, guidance or counselling component. Cancer nurse interventions were targeted at primarily breast, prostate or multiple cancers. No studies were conducted in brain, sarcoma or other rare cancer types. The majority of the studies (n = 153) were nurse-led and delivered by specialist cancer nurses (n = 74) or advanced cancer nurses (n = 29), although the quality of reporting was poor. CONCLUSIONS To the best of our knowledge, this is the first review to synthesise evidence from intervention studies across the entire cancer spectrum. As such, this work provides new insights into the nature of the contribution that cancer nurses have made to evidence-based innovations, as well as highlighting areas in which cancer nursing trials can be developed in the future.