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There have been many studies regarding urinary incontinence in cystic fibrosis females. However, no data concerning that issue was yet investigated in Poland. An anonymous questionnaire was sent by mail to all Polish cystic fibrosis females 16 years of age and older. 64 patients responded to the questionnaire, 44% reported having urinary incontinence. Median age of onset of incontinence was 14.5 years. There were no differences in age, Body Mass Index (BMI), Forced expiratory volume in 1 second (FEV1), Cystic Fibrosis-Related Diabetes and Percutaneous Endoscopic Gastrostomy between continent and incontinent respondents. Significant correlations between urinary incontinence and number of respiratory exacerbations, sexual activity, and constipation were observed. No relationships between frequency and severity of urinary incontinence and form of chest physiotherapy, BMI and FEV1 were identified. Most respondents declared that urinary incontinence affected their daily life and prevented them from chest physiotherapy. Urinary incontinence should be identified and regarded with high priority in cystic fibrosis; health professionals should be aware that it is their responsibility to actively initiate discussion with patients of that subject in early adolescence.

Palliative care is an approach that improves quality of life for patients and their families facing problems associated with a life-threatening illness. Care planning is particularly important in CF, where predicting a time of death is extremely difficult. The patient and family should receive realistic information about health status and further options of care. Particularly important is the explanation that treatment does not stop during the terminal phase of the disease, instead the primary aim is to alleviate unpleasant symptoms. More invasive end of life care is becoming the norm in patients awaiting lung transplantation. Terminal care should be organised in the place chosen by the patient and their family. Ideally terminal care should not end when the patient dies, instead psychological and spiritual support should continue to bereaved families.

Mukowiscydoza jest najczestszą uwarunkowaną genetycznie chorobą rasy bialej. Wydluzenie zycia chorych oraz przewlekly charakter choroby sprawiają, ze jednym z podstawowych warunkow prawidlowego procesu terapeutycznego jest wspolpraca chorego i jego rodziny z zespolem prowadzącym. Choroba jest źrodlem stresu dla samych chorych i ich rodzin; rolą ośrodka prowadzącego chorych na mukowiscydoze jest nie tylko leczenie, ale takze edukowanie chorych i ich opiekunow. W prezentowanej pracy opisano zalozenia, cele i realizacje pierwszego w Polsce kompleksowego programu edukacyjnego dla tej grupy odbiorcow.

Wstep Edukacja jest integralnym elementem leczenia mukowiscydozy. W naszym ośrodku opracowano i wdrozono pierwszy w Polsce kompleksowy program edukacyjny dla chorych na mukowiscydoze i ich rodzin. Cel pracy Celem pracy jest ocena organizacji, formy, treści i efektu zajec prowadzonych w ramach Programu. Material i metody Przeprowadzono badanie ankietowe skierowane do rodzicow 43 dzieci oraz 17-osobowej grupy mlodziezy uczestniczących w zajeciach. Anonimowy kwestionariusz w formie 37 zamknietych pytan zawieral nastepujące grupy informacji: wiek chorego, miejsce zamieszkania, wyksztalcenie rodzicow uczestniczących w Programie, ocene czestości zajec, ocene formy i treści poszczegolnych zajec oraz ocene efektow Programu. Wyniki Wszyscy uczestnicy Programu wypelnili ankiete. Rodzice pytani o najodpowiedniejszą forme zajec najcześciej wskazywali warsztaty i zajecia praktyczne (62,8%). Mlodziez wskazala warsztaty (58,8%) oraz dyskusje (29,4%). Wśrod zajec praktycznych i warsztatow zarowno rodzice, jak i mlodziez najwyzej ocenili zajecia psychologiczne i warsztaty fizjoterapeutyczne. Rodzice zdobyli najwiecej nowych wiadomości na zajeciach poświeconych przeszczepianiu narządow (51,2% respondentow), mlodziez na zajeciach dotyczących zagadnien związanych z planowaniem rodziny (70%). Rodzice i mlodziez uznali za najciekawsze zajecia poświecone przeszczepom (67,4% i 76%). Tematyka wskazywanych zajec byla zalezna od wyksztalcenia rodzicow i wieku dziecka. Rodzice oceniając zajecia dla dzieci za najciekawsze i najbardziej potrzebne uznali zajecia ruchowo-taneczne – odpowiednio 67,4% i 65,1%. Wszyscy uczestniczący rodzice uwazają, ze Program powinien byc kontynuowany. Wnioski Program uzyskal ogolną bardzo dobrą ocene uczestnikow i potrzebe jego kontynuowania.

Context. The current literature suggests that perinatal palliative care (PPC) programs should be comprehensive, initiated early, and integrative. So far there have been very few publications on the subject of home-based PC of newborns and neonates. Most publications focus on hospital-based care, mainly in the neonatal intensive care units.Objective. To describe the neonates and infants who received home-based palliative care in Lodz Region between 2005 and 2011.Methods. A retrospective review of medical records.Results. 53 neonates and infants were admitted to a home hospice in Lodz Region between 2005 and 2011. In general, they are a growing group of patients referred to palliative care. Congenital diseases (41%) were the primary diagnoses; out of 53 patients 16 died, 20 were discharged home, and 17 stayed under hospice care until 2011. The most common cause of death (56%) was cardiac insufficiency. Neurological symptoms (72%) and dysphagia (58%) were the most common clinical problems. The majority of children (45%) had a feeding tube inserted and were oxygen dependent (45%); 39 families received psychological care and 31 social supports.Conclusions. For terminally ill neonates and infants, perinatal palliative care is an option which improves the quality of their lives and provides the family with an opportunity to say goodbye.

Background: Measurement of satisfaction with palliative care seems to be a tool evaluating quality of care, especially in pediatric population. Objective: The aim of this study was the evaluation of care based on satisfaction measured among bereaved parents of patients of Home Hospice for Children of Lodz Region. Methods: An anonymous questionnaire was posted to the parents of 51 children, who died under hospice care between years 2005-2010. Out of 36 questions 27 were divided into 5 domains: general care evaluation, communication with hospice staff, work of basic staff, conditions of social care, preparation for child's death. For standardization of results transformation of raw results in 100-point scale within 0-100 points was conducted. Results: 42 completely filled questionnaires were returned and 37 were included in the analysis. The most frequently reason to use hospice care was the lack of possibility of further hospital care Respondents asked about their fears connected with decision to use hospice care most frequently said that they wouldn't cope with home care, Main expectations connected with hospice care were minimizing the feeling of helplessness. Total value of children's families satisfaction with hospice care was classified as "very good". Average values in all domains excluding the level of preparation for child's death exceeded 75 points significantly. Among the domains which value was classified as "very good" general satisfaction with care and staff-family communication were top classified. Conclusions: Measurement of satisfaction with palliative care key element which determines the strategy of organization development

Context The presence of symptoms that are difficult to control always requires adjustment of treatment, and palliative sedation (PS) should be considered. Objectives We analyzed our experience in conducting PS at home for terminally ill children with cancer during a seven-year period. Methods We performed a retrospective analysis of medical records of children with cancer treated at home between the years 2005 and 2011. Results We analyzed the data of 42 cancer patients (18% of all patients); in 21 cases, PS was initiated (solid tumors n = 11, brain tumors [5], bone tumors [4], leukemia [1]). Sedation was introduced because of pain (n = 13), dyspnea (9), anxiety (5), or two of those symptoms (6). The main drug used for sedation was midazolam; all patients received morphine. There were no significant differences in the dose of morphine or midazolam depending on the patient's sex; age was correlated with an increase of midazolam dose (R = 0.68; P = 0.005). Duration of sedation (R = 0.61; P = 0.003) and its later initiation (R = 0.43; P = 0.05) were correlated with an increase of the morphine dose. All patients received adjuvant treatment; in patients who required a morphine dose increase, metoclopramide was used more often (P = 0.0002). Patients did not experience any adverse reactions. Later introduction of sedation was associated with a marginally higher number of intervention visits and a significantly higher number of planned visits (R = 0.53; P = 0.013). Conclusion Sedation may be safely used at home. It requires close monitoring and full cooperation between the family and hospice team. Because of the limited data on home PS in pediatric populations, further studies are needed.

In Poland, medical curricula cover palliative care for adults, not for children. This paper evaluates feedback of students who participated in a pilot pediatric palliative care education program. Method: An anonymous questionnaire was designed for the students; they were asked to assess each aspect of the program on a scale of 0 to 6 (0 denoted complete dissatisfaction; 6, complete satisfaction). Results: 207 students participated in the program, 197 evaluated it, and 160 formed the research data group. More than 50 percent gave the program 5 points (mean ± SD; 4.91 ± 0.9). A total of 79 students (44 percent) assessed the material as 51 to 75 percent new, and 56 students (31 percent) placed it between 76 and 100 percent. A majority indicated that the material would be most useful to them in their future clinical work. Most respondents (78 percent) stated that pediatric palliative care should be included in the pediatrics curriculum. The contribution of the program instructors was given a high score (on average, 5.26 ± 0.52). Conclusion: The pediatric palliative care education program was feasible, and it was well received by the students who undertook it.

Since patients with cystic fibrosis (CF) are living longer, it is important that sexual health is discussed in early adolescence. We have designed an education programme and evaluated its impact on the knowledge of sexual and reproductive health (SRH) issues in adolescents with CF and their parents. Prior to this programme most information was obtained from the internet, popular publications and other patients. Only 23% of adolescents discussed sexual health issues with their parents. Our programme was for 12 months and consisted of group meetings and individual sessions (16 meetings; 114.5 hours). Patients aged over 14 years and their parents were tested on their CF-related …

Purpose. Most undergraduate palliative care curricula omit pediatric palliative care (PPC) issues. Aim of the study was to evaluate the pilot education programme. Methods. All 391 students of Faculty of Medicine (FM) and 59 students of Division of Nursing (DN) were included in anonymous questionnaire study. Respondents were tested on their knowledge and attitude towards PPC issues before and at the end of the programme and were expected to evaluate the programme at the end. Results. For final analysis, authors qualified 375 double forms filled in correctly (320 FM and 55 DN). Before the programme, students’ knowledge assessed on 0–100-point scale was low (FM: median: 43.35 points; 25%–75%: (40p–53.3p); DN: 26.7p; 13.3p–46.7p), and, in addition, there were differences (P