Help Cancer Survivors Address Extreme Concerns Following Completion of Treatment
Even though survivors have won the fight against their cancer, the war in their bodies may not be over. Survivors deal with myriad acute, chronic, and late effects of cancer and its treatment, in domains ranging from physical to emotional, social, spiritual, and economic. As many as 75% have health deficits from their treatment, and up to 68% express fears about recurrence and concern for the future. Survivors can experience symptoms for more than 10 years following treatment.In their article in the January 2013 issue of the Oncology Nursing Forum, Ness et al. reported on the results of a survey of cancer survivors evaluating their most prevalent symptoms and concerns. The most extreme concerns reported—and tips for tweaking survivorship plans to address those concerns—are included. Cancer Survivors’ ConcernsA total of 337 nonrandomized participants completed the survey, which asked survivors to rate various symptoms from 0 (no concern) to 5 (extreme concern). Participants had a median age of 63 years and were predominantly Caucasian and female. Forty-four percent had a breast cancer diagnosis. The sample is consistent with the general U.S. cancer survivor population.As a whole, the sample identified fear of recurrence as the most prevalent and severe concern across all domains. Additional concerns were grouped within each domain.Physical domain: Concerns with the highest mean scores on the survey were fatigue, sleep disturbance, memory and concentration, and loss of strength. However, when Ness et al. (2013) excluded those who rated a symptom as 0, the most prevalent concerns were sexual issues, peripheral neuropathy, hair and skin care, and fertility.Social domain: Financial issues were the most prevalent social concern, specifically debt, returning to work, financial concerns, and health insurance.Emotional domain: The most prevalent of the concerns, mentioned earlier, fear of recurrence, falls into this domain. Other emotional concerns that ranked highly were living with uncertainty, defining a new sense of normal, and managing stress.Spiritual domain: Concerns falling into this domain did not score highly in the sample overall. A small number of participants gave end-of-life concerns a moderate rating.Other: Only long-term care was a prevalent concern in the “other” category.Extreme Concerns for Survivors by DiagnosisNess et al. (2013) separated extreme concerns by type of diagnosis and time since diagnosis and noticed patterns that differed from overall concerns.Breast cancer: Within the first year of a breast cancer diagnosis, hair and skin care was the most prevalent extreme concern, followed by hot flashes and fear of recurrence. At two to five years after diagnosis, hot flashes, peripheral neuropathy, and fear of recurrence were the most reported extreme concerns. Long-term survivors (6–20 years) had no prevalent extreme concerns.Prostate cancer: This diagnosis was associated with the fewest extreme concerns. Sexual issues were the most prevalent extreme concern in survivors in the first five years after diagnosis; the concern continued into the 6–20 years postdiagnosis.Gastrointestinal cancers: In the first five years after diagnosis, fear of recurrence was the most reported extreme concern.Hematologic cancers: Fatigue, fear of recurrence, return to work, and financial concerns were the most reported extreme concerns in the first year after diagnosis. At two to five years after diagnosis, long-term effects of treatment became the most extreme concern. Fear of recurrence and sleep disturbance were the most prevalent extreme concerns at 6–20 years postdiagnosis.Gynecologic cancers: This diagnosis was associated with the most overall number of extreme concerns. In the first five years, the most prevalent extreme concerns were fear of recurrence, managing stress, fatigue, and debt from medical bills. At 6–20 years after diagnosis, the most reported extreme concerns were related to health insurance. For more information on extreme concerns across all participants, regardless of diagnosis, see Figure 1.Implications for Survivorship ProgramsPatients who reported any concerns had lower levels of overall quality of life (QOL), but for patients with extreme concerns, QOL was even lower. Extreme fatigue concerns most negatively impacted QOL. Ness et al. recommended that survivorship programs continue to address this issue across survivors’ lifetimes, incorporating resources and strategies for energy conservation, nutrition, exercise, sleep hygiene, and stress management.The most prevalent extreme concern across most diagnoses was fear of recurrence. Ness et al. noted that it was reported more frequently than any physical concern and stressed that tailored survivorship programs may help. They said that the programs should be designed to support patients and families on what to expect as they transition from active treatment to long-term survivorship. Ideas may include psychosocial programs, such as cognitive restructuring; addressing and reframing fears; mind-body techniques; building resilience; and defining a new sense of self.Although sexual issues were reported most frequently by prostate cancer survivors, patients with all types of cancer noted sexual or intimacy concerns at some time from diagnosis. Ness et al. recommended that survivorship programs be designed to address ongoing sexual issues.For more information on concerns and extreme concerns of cancer survivors following completion of treatment, refer to the full article by Ness et al.Five-Minute In-Service is a monthly feature that offers readers a concise recap of full-length articles published in the Clinical Journal of Oncology Nursing or Oncology Nursing Forum (ONF). This edition summarizes “Concerns Across the Survivorship Trajectory: Results from a Survey of Cancer Survivors,” by Sheryl Ness, RN, MA, OCN,®, Janine Kokal, RN, MS, OCN®, Kelliann Fee-Schroeder, RN, BSN, OCN®, Paul Novotny, MS, Daniel Satele, BS, and Debra Barton, RN, PhD, AOCN®, FAAN, which is featured in the January 2013 issue of ONF. Questions regarding the information presented in this Five-Minute In-Service should be directed to the ONF editor at ONFEditor@ons.org. 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