Symptom burden, psychological distress, and health-related quality of life in cancer survivors with pelvic late radiation tissue injuries.

PURPOSE: Curative radiotherapy for cancer may lead to severe late radiation tissue injuries (LRTIs). However, limited knowledge exists about pelvic cancer survivors' LRTI symptoms, distress, and health-related quality of life (HRQOL). We sought to assess the symptom burden, distress, and HRQOL in survivors with established pelvic LRTIs compared to norm populations and to investigate the relation between these factors. METHODS: Cancer survivors referred for treatment of established pelvic LRTIs were recruited nationwide. LTRIs were assessed with the Expanded Prostate Cancer Index Composite (EPIC), psychological distress was assessed with the General Health Questionnaire (GHQ-12), and HRQOL was assessed with the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORCT-QLQ-C30). RESULTS: A total of 107 participants (mean age 64, 53% men) were included. Compared to norms, participants reported more urinary (mean 68.7 vs. 89.5; p = 0.00; d = 1.4) and bowel symptoms (mean 62.5 vs. 92.4; p = 0.00; d = 2.7), increased psychological distress (mean 13.4 vs. 10.3; p = 0.00; d = 0.6), and overall poorer HRQOL (mean 54.9 vs. 71.2; p = 0.00; d = 0.7). Higher symptom burden and higher levels of psychological distress were associated with lower HRQOL (r2 = 46%), but psychological distress did not moderate the influence of symptoms on HRQOL. CONCLUSION: Cancer survivors with established pelvic LRTIs are highly burdened compared to norms. The association of the LRTI-related symptom burden with HRQOL is independent of the level of psychological distress. Both coping and treatment interventions are crucial to promoting long-term health and HRQOL. TRIAL REGISTRATION: NCT03570229.

Symptom burden and health-related quality of life six months after hyperbaric oxygen therapy in cancer survivors with pelvic radiation injuries.

PURPOSE: Late radiation tissue injuries (LRTIs) after treatment for pelvic cancer may impair health related quality of life (HRQoL). Hyperbaric oxygen therapy is an adjuvant therapy for LRTIs, but limited studied. The aim of this study was to explore the development and association between symptoms of LRTI and HRQoL following hyperbaric oxygen treatment. METHODS: A pretest-posttest design was used to evaluate the changes in pelvic LRTIs and HRQoL from baseline (T1), immediately after treatment (T2) and at six-month follow-up (T3). EPIC and EORTC-QLQ-C30 were used to assess LRTIs and HRQoL. Changes were analysed with t-tests, and associations with Pearson's correlation and multiple regression analyses. RESULTS: Ninety-five participants (mean age 65 years, 52.6% men) were included. Scores for urinary and bowel symptoms, overall HRQoL, all function scales and the symptoms scales sleep, diarrhoea, pain and fatigue were significantly improved six months after treatment (P-range = 0.00-0.04). Changes were present already at T2 and maintained or further improved to T3. Only a weak significant correlation between changes in symptoms and overall HRQoL was found (Pearson r-range 0.20-0.27). CONCLUSION: The results indicate improvement of pelvic LRTIs and HRQoL following hyperbaric oxygen therapy, corresponding to minimal or moderate important changes. Cancer survivors with pelvic LRTIs and impaired HRQoL may benefit from undergoing hyperbaric oxygen therapy. Especially the reduced symptom-severity and improved social- and role function can influence daily living positively. TRIAL REGISTRATION: ClinicalTrials.gov: NCT03570229. Released 2. May 2018.

Young adult cancer patients' experiences of private social network support during cancer treatment.

AIMS AND OBJECTIVES: To explore young adult cancer patients' experiences of support from their private social network during cancer treatment. BACKGROUND: Cancer treatment in young adulthood (aged 18-35 years) can be distressing. Social support is crucial for health and well-being, especially for young people and in times of crisis. Research indicates that young cancer patients experience a lack of social network support, but little is known about the types of private social network support available during cancer treatment. DESIGN: Qualitative study with interpretive descriptive design. METHODS: Twenty young adult cancer patients with different cancer diagnoses were interviewed retrospectively using a semi-structured interview guideline. Data were analysed using systematic text condensation. The COREQ checklist for qualitative research was followed. RESULTS: "From independence to dependence" was identified as a bridging theme, which was elaborated by four sub-themes: (1) "My partner was my rock-or not"; (2) "My family stood by me-or not"; (3) "My friends supported me-or not"; and (4) "I lacked young adult cancer peers-or not." CONCLUSION: The patients' major sources of private social network support were their partners and close family members. Only a few friends supported them during cancer treatment, and most lacked peer support. The type of social network support they received varied, and not all support was perceived as helpful. Helpful network support was experienced as being unconditional and given with empathy and without prompting. Patients without sufficient support from a partner or family members seem to be especially vulnerable. RELEVANCE TO CLINICAL PRACTICE: Nurses play a crucial role in educating young adult cancer patients about the importance of social support and helping them to map their social network and being explicit when requesting support. Nurses should inform patients' networks about both helpful and unhelpful support and should facilitate interaction between patients.

"There Should Have Been a More Holistic Approach"-A Qualitative Study of Young Adult Cancer Survivors' Experiences of Follow-up After Cancer Treatment.

BACKGROUND: Young adult cancer survivors (YACSs) are in a vulnerable period of life with increased risk of severe physical and psychosocial late effects. However, limited research exists on follow-up of YACSs after cancer treatment. OBJECTIVE: The aim of this study was to explore how YACSs experience follow-up from the healthcare system after finishing cancer treatment. METHODS: Using a qualitative method with an interpretive descriptive design, 20 YACSs were interviewed 4 times over a period of 6 months. The transcribed interviews were analyzed using Systematic Text Condensation. RESULTS: Four main themes were identified: "They should have prepared me better," "The GP (general practitioner) does not understand my challenges," "My check-ups are all about cancer relapse," and "I do not know who's in charge." CONCLUSION: The findings indicate deficiency in the healthcare system's follow-up of YACSs in terms of preparation for the survival phase, interdisciplinary cooperation, and acknowledgement of late effects, as well as organization of follow-up care within the healthcare system. IMPLICATIONS FOR PRACTICE: A more holistic perspective on follow-up care that addresses YACSs' multidimensional challenges is suggested, including a multidisciplinary approach where cancer nurses should play an active role.

Early Interventions Following the Death of a Parent: Protocol of a Mixed Methods Systematic Review.

BACKGROUND: Previous meta-analyses examined the effectiveness of interventions for bereaved children showing small to moderate effect sizes. However, no mixed methods systematic review was conducted on bereavement interventions following the loss of a parent focusing on the time since death in regard to the prevention of grief complications. OBJECTIVE: The overall purpose of the review is to provide a rigorous synthesis of early intervention after parental death in childhood. Specifically, the aims are twofold: (1) to determine the rationales, contents, timeframes, and outcomes of early bereavement care interventions for children and/or their parents and (2) to assess the quality of current early intervention studies. METHODS: Quantitative, qualitative, and mixed methods intervention studies that start intervention with parentally bereaved children (and/or their parents) up to 6 months postloss will be included in the review. The search strategy was based on the Population, Interventions, Comparator, Outcomes, and Study Designs (PICOS) approach, and it was devised together with a university librarian. The literature searches will be carried out in the Medical Literature Analysis and Retrieval System Online (MEDLINE), PsycINFO, Excerpta Medica Database (EMBASE), and Cumulative Index to Nursing and Allied Health Literature (CINAHL). The Mixed Methods Appraisal Tool will be used to appraise the quality of eligible studies. All data will be narratively synthetized following the Guidance on the Conduct of Narrative Synthesis in Systematic Reviews. RESULTS: The systematic review is ongoing and the data search has started. The review is expected to be completed by the end of 2017. Findings will be submitted to leading journals for publication. CONCLUSIONS: In accordance with the current diagnostic criteria for prolonged grief as well as the users' perspectives literature, this systematic review outlines a possible sensitive period for early intervention following the death of a parent. The hereby presented protocol ensures the groundwork and transparency for the process of conducting the systematic review. TRIAL REGISTRATION: International Prospective Register of Systematic Reviews (PROSPERO) CRD42017064077; http://www.crd.york.ac.uk/PROSPERO/display_record.asp?ID=CRD42017064077 (Archived by WebCite at http://www.webcitation.org/6rMq6F0fv).

Systematic Early Intervention for Bereaved: Study Protocol of a Pilot Randomized Controlled Trial With Families Who Suddenly Lose a Partner and a Parent.

BACKGROUND: Grief has been associated with several long-term negative outcomes for both surviving parents and bereaved children, especially when it is preceded by unnatural and violent deaths. Nevertheless, it has been an underestimated public health problem with few, if any, empirically documented early preventive intervention programs. The best time to start them is also a major question that requires further evidence. OBJECTIVE: The overall aim of this study is to assess the feasibility of a future larger trial, informing sample size calculation, recruitment/randomization procedures, retention rates, data collection forms, and outcomes. This study will also explore: (1) the early effects of Systematic Early Intervention for Bereaved (SEIB) compared with the early effects of care as usual, and (2) the effects of the immediate SEIB version compared with the effects of the delayed SEIB version. METHODS: In a pilot randomized controlled trial (RCT) with a delayed intervention design, suddenly bereaved families will be assigned to: the immediate-SEIB intervention group, or the delayed-SEIB intervention group. Participants will fill in a set of self-report measures at baseline, and after 3, 6, and 9 months follow-up. Quantitative data on traumatic stress symptoms, complicated grief, psychological wellbeing, daily functioning, social support, parental capacity, parenting practices, and family functioning will be collected to inform power calculations and explore SEIB's preliminary effects. Data on the flow of participants throughout the trial will be analyzed in order to estimate recruitment and retention rates. Two brief questionnaires were developed to assess recruitment procedures, randomization, and data collection materials. RESULTS: Recruitment for this project started in August 2015, and follow-up data collection will be completed in June 2017. CONCLUSIONS: This study prepares the ground work for the design and implementation of a main trial and may add preliminary knowledge to the significance of early supportive practices that have been commonly used regardless of their sparse evidence.