Young adults in many countries pride themselves on their work. They have worked hard to get to where they are and there is a huge sense of accomplishment in joining the adult world and being able to provide for themselves and their new families if applicable. When cancer comes along, their ability to work can be one of the many aspects of their life that is affected. A recent study has analyzed the factors that limit the ability of young adult cancer survivors to work.
The study starts by highlighting that late side effects from cancer can extend for months or years beyond cancer treatment. They can greatly interfere with career development of young adults. The study looked at the work ability of cancer patients from ages nineteen to thirty-nine. To obtain a study sample, researchers used the Cancer Registry of Norway to identify patients who had been diagnosed with melanoma, colorectal cancer, stages I-III breast cancer, non-Hodgkin lymphoma or leukemia. The time frame extended from 1985 to 2009. The study method included a questionnaire that asked them about the late effects of treatment and their work status. They could then score themselves from zero to ten based on their ability work, with ten being the highest work ability.
The median age of the 1,198 people who responded to the questionnaire was forty-nine years old. There was a median of thirteen years since the participants had received treatment and sixty percent had a full-time job at the time of the questionnaire.
Results seem dismal
The results indicated a that a “low level of education, female sex, lymphoedema, fatigue, depression, and decreased physical quality of life and health were all factors that contributed to a low Work Ability Index.” It also showed that people who had been diagnosed with non-Hodgkin lymphoma were at a higher risk of a low Work Ability Index than individuals with melanoma. It turns out that according to this study treatment intensity was not a factor in determining an individual’s work ability.
The lead author Dr. Cecilie Kiserud, the chair of the National Advisory Unit for Late Effects After Cancer Treatment at Oslo University Hospital in Oslo Norway stated, “We found that psychological and physical late effects of cancer and other conditions were significantly associated with reduced work ability. In comparison, treatment intensity and cancer type, apart from non-Hodgkin lymphoma, were not significantly related to work ability.”
There is a need for support
This just further highlights the need for support for survivors and the development of programs to help them regain their life back after battling cancer. Dr. Kiserud supported this by saying, “Greater awareness is needed about the fact that cancer survivors may be less able to work after treatment because of the late effects they might experience.” The work ability of a survivor may be affected more by the psychological consequences of cancer than the disease itself. “Around 80% of young people with cancer can be cured, but the treatments are intensive and two-thirds of survivors have long-term physical and psychological consequences. This study shows that the psychological and somatic effects of treatment are associated with reduced work ability, rather than the cancer itself.” Professor Gilles Vassal, the Director of Clinical Research at Gustave Roussy in Willejuif, France and the Pas President of the European Society for Pediatric Oncology (SIOPE). He continued to emphasize the importance of preparing young adult cancer patients by educating them about the potential toxicities of treatment. He also discusses the importance of further clinical trials aiming to reduce the toxicity of treatments without lessening the chance of a cure. Part of providing comprehensive patient-centered care is helping to not only empower the patient in the present moment, but help ensure that they are prepared for future issues that may arise and have resources to regain their life. Appropriate follow-up and referral to psychological resources as necessary are important.
Another important factor in ensuring that patient is getting the holistic care that he/she means is access to specialized centers that are skilled in managing the various side effects that result from cancer and its treatments. A second study revealed that this is a problem that many health care providers have identified. More than two-thirds of health care providers treating young adults and adolescents in Europe have said that they have no access to specialized centers. This issue was more prevalent in Eastern and Southern Europe than in other areas with Western medicine.
A link to an online survey was sent to members of the SIOPE and the European Society for Medical Oncology (ESMO). At the ESMO 2107 Congress, 266 of the survey responses were reported. It showed that sixty-seven percent of health professionals had no access to the specialized services that could better enable them to care for their patients both during and after the cancer battle. Almost the same number of providers said that they had no knowledge of research in their particular country that could help meet the needs of this age group of patients. Referrals to psychological resources were social workers are something that many providers are able to do, and about half of them have access to an age specialized nurse. These are positive factors, as they help patients get the individualized and age appropriate care. This can help ensure that all of their needs are being met.
Unfortunately, there are many other factors that contribute to the wellbeing of young adults during cancer survivorship. Fertility concerns are prominent in this age group and yet thirty-eight percent of respondents said that young cancer patients did not have access to fertility specialists to help educate them and prepare them for the future. The providers who answered the survey desired more education in how they could improve the care that they provide to young adults with cancer, and how they can address the long-term effects of treatment with these patients as well as preventing relapses and additional cancer diagnoses, and improving molecular identification of tumors in this population. Perhaps more training for health care professionals and a team based approach with various specialists is the way forward for at least half of these desires.
Another medical professional emphasized these gaps in patient care, "The survey found gaps and disparities in cancer care for adolescents and young adults across Europe. Improving care through education and research in this age group is a growing priority for ESMO and SIOPE" said lead author Dr. Emmanouil Saloustros, a consultant medical oncologist at the general Hospital of Heraklion ‘Venizelio,’ in Heraklion, Crete, Greece. About the study he said that the specific needs of patients are not always addressed buy pediatric of general oncology center and that this survey brings to light the lack of specialized care among this population of cancer patients and survivors. He discusses models in some other countries that can be used as examples for the countries hoping to develop more specialized care. The UK and France both have teams that are prepared to not only improve survival, but also the quality of life for adolescent and young adult cancer patients. Hopefully now that community of health care professionals providing care to cancer patients have been made aware of some of the gaps in care to young adults, interventions can be developed that will help improve the quality of their life after treatment. Ideally this will help them achieve and maintain a good work ability during their survivorship.