Background. Katie Rizvi, Amalia Axinte. Abstract. Rezumat

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1 Katie Rizvi, Amalia Axinte Little People Association, Romania Abstract The study investigates young Romanian cancer survivors perceptions about their treatment period as well as their lives after end of treatment, particularly exploring their views on access to information, effective support services, reintegration and readjustment difficulties, as well as health-related concerns after end of treatment. The study group was represented by 117 young Romanian cancer survivors aged between 14 and 29 years who anonymously responded to a questionnaire developed by the Little People Association. The results show the importance of supporting health professionals who interact most with the teenage and young adult demographic, and whose means of communicating and connecting have a profound effect on the way young people perceive their own illness, treatment options and hope for healing. The study also reveals possible causes behind the young survivors reluctance in showing up for regular medical checks, as well as what the young people believe would improve treatment adherence of teenage and young adult patients in general. Keywords: survivors of paediatric cancer, access to information, psychosocial support services, end of treatment, reintegration Rezumat Studiul a avut drept scop investigarea percepției pe care o au tinerii supraviețuitori de cancer din România asupra unor aspecte din perioada de tratament și după finalizarea acestuia, cu un accent deosebit pe accesul la informație, contextul medical, ierarhizarea aspectelor importante pe parcursul tratamentului, dificultățile de reintegrare, vizitele medicale periodice și grijile cu care se confruntă tinerii după încheierea tratamentului. Grupul de studiu a fost reprezentat de 117 tineri supraviețuitori de cancer din România, cu vârsta cuprinsă între 14 și 29 de ani, care au completat în anonimat un chestionar conceput special de către Asociația Little People. Studiul a subliniat o serie de concluzii semnificative, care reprezintă un suport informațional important pentru programele care oferă sprijin psiho-social grupurilor de tineri supraviețuitori de cancer, precum și medicilor din acest domeniu. De asemenea, subliniază importanța de a oferi sprijin cadrelor medicale care interacționează cu acest segment demografic de tineri vulnerabili și a căror modalitate de comunicare și relaționare are un efect profund asupra felului în care tinerii își percep propria boală, opțiunile pentru tratament și speranța pentru vindecare. Studiul mai relevă și posibile cauze pentru care tinerii supraviețuitori evită să meargă la controalele medicale periodice și ce consideră tinerii că i-ar ajuta pe pacienții curenți în aderența la tratament. Cuvinte-cheie: tineri supraviețuitori de cancer, acces la informații, servicii de suport psiho-social, perioada de după tratament, reintegrare 40 Background Psychosocial adaptation to the cancer experience is not a single event but rather, an ongoing process, comprised of a series of coping responses to multiple challenges that occur at significant and common periods of crisis throughout the cancer journey. It has been described as a process in which the patient tries to manage emotional distress and gain control over cancer-related events. These events include the stages of diagnosis, treatment (surgery, radiation, and chemotherapy), post-treatment and remission, recurrence and palliative care or survivorship (1,2). We discuss successful psychosocial adjustment when emotional distress remains controlled. The aim is to help minimize interruptions to family and life roles and for the patient to remain actively involved in aspects of life that continue to hold meaning and importance (3). Literature widely contributes success in adjustment to the presence of few or many and a combination of factors and in 2012 the Little People Association especially looked at patient-derived factors such as intrapersonal coping resources and interpersonal social support (support groups, family support etc.) in a cohort of 86 paediatric cancer survivors. These scales were a part of a larger, health-related quality of life study in adolescent and young adult survivors of childhood cancer in Romania, also investigating how survivors see their role in getting sick again or keeping healthy. The study also included a Health-Related Quality of Life Questionnaire, a Medical Avoidance Survey and Health Value and Locus of Control. Looking at psychosocial adjustment and specifically the role of coping mechanisms, our

2 oncolog-hematolog ro findings show positive reframing to be in significant relationship with positive feelings (r(85)=.405, p<.01) and positive reframing, used as a coping mechanism, is correlated with finding meaning and finding benefits in the cancer diagnosis (r(86) =.401, p<.01). Compared with a control group of adolescents and young adults who don t have health-related problems (N=93), young cancer survivors who are part of a support group use positive reframing significantly more (t=2.727, p<.01). The study concluded that intervention programs for cancer survivors must include the teaching of healthy coping skills, facilitate access to information, aid communication in the doctor-patient relationship, help increase confidence in the medical services, develop social strategies for families with financial problems and not the least, strategies must include the organization of awareness campaigns in the community. As a follow-up to the previously described study, in a new investigation we looked at Romanian young cancer survivors perceptions about their treatment period as well as their lives after end of treatment, particularly exploring their views on access to information, effective support services, reintegration and readjustment difficulties, as well as health-related concerns after end of treatment. The study was presented on the 8 th Regional Central-Eastern/South-Eastern European Paediatric Oncohematology Meeting and the 16 th Romanian- Hungarian Paediatric Oncology Meeting that was held in Cluj-Napoca on October 2013, organised by the Romanian Society of Paediatric Oncohematology, the University of Medicine and Pharmacy Iuliu Hatieganu Cluj-Napoca, the Beatrix Buhrer Association for Support of Children with Cancer and the Little People Association. Method 117 young Romanian cancer survivors aged between 14 and 29 (mean age: 19.43, median age: 19 years) represented the study group. 48.7% were between and 51.3% between years of age. 49.6% male and 50.4% female. 29.2% finished therapy more than 5 years ago (<2008) while 70.8% finished therapy less than 5 years ago (>2008). The average time they stayed in treatment was 2.3 years. Most of them were between years old at the time of diagnosis. They anonymously responded to a questionnaire developed by the Little People Association. Results I. a) Access to information - diagnosis: the results showed that 19.8% of the young people surveyed did not know their diagnosis while they were hospitalized. At that time 78.3% of them were over 7 years of age, while 56% were aged 12 years and over when, according to J. Piaget s theory of cognitive development, children are already able to understand their diagnosis. Over 16% of those who said they did know their diagnosis did not know that their diagnosis was a type of cancer. Two young people responded to the survey: I did not have cancer, I had leukaemia - indicating currently existing lack of clarity of definitions. Children under the age of 14 learned about their diagnosis mostly from the mother, while young people aged 14 or older received this information primarily from their doctor. 74.3% of those who found out from parents were under 14 years of age, while 25.7% were aged 15 or older. Those who found out by themselves (not from parent and not from doctor) were mostly over 15 years of age at the time of treatment (71.4%), except 28.6% who were under 14 years old. Some figured out that they had a type of cancer and described their discovery as a result of observing side effects or hearing about having to undergo chemotherapy. For example: I knew that if your hair falls out you have cancer, when I heard what kind of treatment I ll get, I knew it was cancer. Some found out as they described, by accident - linking name of diagnosis with the word cancer after watching television programs or by overhearing conversations. E.g: I understood sometime during treatment that leukaemia is actually cancer, I heard it on TV, by accident, in the hospital, from the other kids, I kind of figured it out seeing my parents reaction. Some of them did active research: I was snooping around documents I listened in to discussions (about me), I read the results, I looked it up on the Internet. There are no significant differences between the 2 genders regarding knowledge of diagnosis or understanding that it was a type of cancer. Interestingly, from the 19.8% who did not know their exact diagnosis, 2.58% knew that they did have a type of cancer. Also, from the 19.8% who did not know their diagnosis at the time of treatment, 21 answered that they had found it out later: 33.3% found out after less than a month and 42.85% after 2 years or more (these respondents were quite young at the time of diagnosis and treatment). Those who found out later that they have had cancer, marked the source of the information to have come from parents (40%), discharge documents and the Internet (25%), from school and other kids (10%), the doctor (10%), observing long term effects (5%), from siblings (5%) - or they don t remember when or how exactly it was that they gained understanding (5%). I. b) Access to information - side effects: 71% said YES to the statement: My doctor explained to me the secondary effects of the treatment. There is a significant positive correlation with age (p<.05): the older they were at the time of treatment, the more they confirmed that their treating physician explained the secondary effects of therapy. However, 10.5% of those who said yes above, marked later on in the survey: I was NOT informed about side effects or I was NOT FULLY informed about side effects. Also 30% of those who said they were not informed, or they don t know if they were informed, still answered YES to the first statement on the role of their doctor: My doctor explained to me about the secondary effects of the treat- 41

3 ment when asked about the role of their medic. These inconsistencies might indicate lack of understanding of terminology or that some of the patients might feel that still, at this point in their life, are not fully aware of everything and in spite of previous explanations, still have questions. All in all, only 57% of the young people said that they were informed about the side and late effects of oncology treatment (by somebody), while 13% believe that the information was not adapted to their age and level of understanding. When describing what would they have liked to known more about at the time of treatment in an open question, examples of questions were: How did I get sick all of a sudden?, Why did I get sick?, I would have liked to find out everything from the beginning, I should have known about side effects, Everything should have been explained in a lot more detail, would have liked knowing the (late) effects of chemo then, I was very optimistic maybe it s for the better that I didn t know everything. I. c) Access to information - after end of treatment. When asked about what kind of information they would like to know at this moment, 47.7% were interested in how to take care of their health, 41.4% wanted to know more about the late effects of treatment, and interestingly, over 49% wanted to find out how to counteract the different myths about cancer and the negative media trends in society (this might have been influenced by the fact that at the time of the questionnaire the survivorship group itself was discussing ideas for awareness campaigns and topics of discrimination and stigma were otherwise addressed). To the question: Do you have enough information about your health NOW? 28.7% responded that they do but still would like to find out more and 8.3% definitely feel they do not know enough. It is important to note that 2.8% responded that they know that they don t know enough, but they do not want to know more. When survivors look for information the doctor plays a significant role (65.7%), while over 50% try to find answers on the Internet (Figure 1). Investigating health-related anxieties ( Are you worried about your health? ) 21.4% confirmed that they do. Those who confirmed that they do worry, mainly fear relapse (71%), worry about long term effects (14%), question whether they will have a normal life (11%) and 4% still worry about what caused their illness (Figure 2). The respondents agree on the following things being helpful in coping with anxiety in the post-treatment period, in order of importance: leading an active lifestyle (generally), having support primarily from family, secondary from friends, being able to access safe and confirmed sources of information (medical), having a support group, having positive attitudes such as hope and trust (or faith - the Romanian language of the survey permits interpretation), being in a romantic relationship, seeing your physician regularly, socio-economic status - such as having decent living conditions and income, having a job specifically, having faith and believing in God, volunteering and fundraising (for others who are Figure 1 42

4 oncolog-hematolog ro Figure 2 sick), finding acceptance and understanding and having access to physiotherapy (where indicated). As opposed to identifying their doctors as their main source of information about health-related questions (followed closely by the Internet), when they have worries, indifferent of age, they prefer to talk to their parents - especially their mothers (72.1%). They also confine in close friends or their doctors (both 28.8%!), other family members like siblings (17.1%) and other survivors in the support group (15.3%). Only 10.8% say they do not share their worries with anyone and even less talk to psychologists. Some prefer to discuss fears Figure 3 43

5 Figure 4 44 and worries with strangers on the Internet, possibly referring to online disease-specific support groups, but it s not specified (Figure 3). II. When asked to prioritize the types of support they depended on during treatment, the top three points Figure 5 highlighted by the young people were: 1) the importance of their parents and family members being present, 2) a good relationship with their doctor, and 3) the opportunity to talk openly with someone about their problems and feelings. The most important comfort measure young people indicated for the period of treatment and hospitalisation was to have their parents with them. Only a few of them, aged between years, didn t consider the presence of the parents very important. The rest of them declared it to be the most important comfort measure and the younger they were in treatment, the more important it was for them (p<.05). The second was to have a good relationship with their doctor. In another part of the survey it is revealed that 80% of the young people say that their paediatric oncologist played the most significant role in their healing. The third most important factor identified was to have an opportunity to talk openly with someone about their problems and feelings, and there is a significant correlation (p<.05) between respondents who were not told their diagnosis at the time of treatment, finding this measure to be of a very high importance. Other measures of support indicated by the responding young people, in order of importance, were as follows: to have friends visiting, not thinking about the disease, keeping up with school and talk with others with a similar medical problem. The younger they were at the treatment, the more important they felt this was. A possible answer to this could be that for older patients the Romanian national survivorship community - Temerarii - provides an ongoing regular peer-support program since Next were to have access to age-appropriate activities, to have written information available

6 oncolog-hematolog ro about the disease and treatment (the older they were at the time of therapy, the more important this measure was; p<.01). Other significant measures identified were to have intimacy and be allowed to stay with young people their own age during hospitalisation. There were no gender differences in the order of importance of comfort and support measures identified. III. The role of the physician: More than 80% of the surveyed young people say that their paediatric oncologist played the most significant role in their healing. Although initially it seems that young people do not feel they have a major role in the decision-making process regarding their own health, 42.2% of them said they did receive help from their attending physician in this regard. There is a significant negative correlation (p<.01) between age at treatment and satisfaction of shared decision-making with their paediatric oncologist, clearly indicating that the older they were at the time of treatment, the more they expected to be consulted and be part of the decisionmaking process regarding their own health. Investigating the after-treatment period, the study shows that 81% of the young survivors would like to continue being followed-up indefinitely on the same paediatric oncology ward where they were initially treated, while another 11% would consider it important for these visits to take place either in a ward dedicated to follow-up visits only (7.8%) or in a department devoted exclusively to young adult and teenage patients (3.4%) (Figure 4). During the last year 15.2% skipped at least one follow-up visit. Reasons identified were timing conflicts (exams or work) for 31%, not being home (or travelling difficulties - but we are not sure) for 23%, anxiety of unwanted results and fear of relapse 15%, feeling fine and not being convinced of the need for a medical checkup 15%, or feeling ill (possibly risking having a bad outcome of follow up check) 8%. Financial problems represented 8% of responses for having missed a follow-up appointment in the last one year (Figure 5). IV. Reintegration and readjustment: Asked about the challenges and difficulties that young cancer survivors face, 37% reported difficulty in returning to school or the workplace. Reasons noted include difficulty socia lizing, poor body image and accumulated difficulties due to long periods of learning missed during hospitalization % of all female respondents reported such difficulties, while only 27.58% of all males reported problems. Over 22% of the young people surveyed, aged between 19 and 29, do not study and do not have a job. More than 13% provided pessimistic answers in regards to how past diagnosis and treatment will affect their future romantic or family life. Of all the respondents, 64.8% speak openly about their diagnosis with others, 24.1% only talk with close friends or when it s really necessary and 11.1% don t like to discuss their disease at all and even hide it. Twice as many males than females and more than half of those who don t discuss it or hide it today are those who were not disclosed their diagnosis or did not know that they were treated for cancer, at the time of therapy. Conclusions The study highlighted the importance of supporting health professionals who interact most with the teenage and young adult demographic, and whose means of communicating and connecting have a profound effect on the way young people perceive their own illness, treatment options and hope for healing. Teens not only need to be encouraged to take part in the medical decision-making process, but the older they get, the more they expect to be a part of it. They primarily want to find answers to health-related questions from their treating physician, but more than half of them will be looking for information on the Internet as well. It s paramount that correct, reliable and written information is available for this age group. Our findings confirm the need for a document that will summarise survivors cancer related medical history, providing guidance for follow-up, based on guidelines approved at European or international level, addressing quality of survivorship issues, such as is the initiative of the EU 7FP financed ENCCA project WP13 Survivorship Passport. At the same time, it s also important to teach the survivor population to ask for their individual survivorship care plan that summarizes the treatment received to date, follow-up appointment frequency schedule and a checklist of relevant late effects of treatment - as this seems to be one of the most important measures in combating anxiety, worry and frustration for teenage and young adult long term survivors of childhood cancer. Romanian young people s enthusiastic participation and leading the number of respondents in the whole of Europe in the ENCCA ENTYAC survey aimed at young people who are currently being or have been treated for cancer, aged years, also shows the real need of young survivors to have their voices heard. The ENCCA Symposium in Vienna Clinical Research in Burning Issues allowed discussion on the topic of teenagers informed consent from an ethical point of view. While decision making at this time ultimately remains with the parents for those under 18 years of age, we must increasingly be aware of the need to include young people in the process and to understand their need for adequate and age-appropriate information and their right to psychosocial and supportive care that addresses the whole patient. NGO s roles are also clearly indicated in funding and providing additional psychosocial services, organising or financing support groups and awareness campaigns such that educate about early detection as well as promotes freedom from stigma associated with cancer. References 1. Brennan, J., Adjustment to cancer - coping or personal transition?, Psycho-oncology 10 (1): 1-18, 2001 Jan-Feb. 2. Kornblith, A.B., Psychosocial adaptation of cancer survivors, In: Holland J.C., Breitbart W., Jacobsen P.B., et al., eds.: Psycho-oncology. New York, NY: Oxford University Press, 1998, pp Spencer S.M., Carver C.S., Price A.A., Psychological and social factors in adaptation, In: Holland J.C., Breitbart W., Jacobsen P.B., et al., eds.: Psycho-oncology. New York, NY: Oxford University Press, 1998, pp