What are cancer survivors’ needs and how well are they being met?

,; ,; ,; ,; ,

Original Research

What are cancer survivors’ needs and how well are they being met?

J Fam Pract. 2014 October;63(10):E7-E16

PDF Download

References

1. Potosky A, Han PK, Rowland J, et al. Differences between primary care physicians’ and oncologists’ knowledge, attitudes and practices regarding the care of cancer survivors. J Gen Intern Med. 2011;26:1403-1410.

2. Rowland J. Survivorship research: past, present, and future. In: Chang AE, Ganz PA, Hayes DF, et al, eds. Oncology: An Evidence-Based Approach. New York, NY: Springer; 2005:1753-1767.

3. Jemal A, Center MM, DeSantis C, et al. Global patterns of cancer incidence and mortality rates and trends. Cancer Epidemiol Biomarkers Prev. 2010;19:1893-1907.

4. Hewitt ME, Greenfield S, Stovall E, eds. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: National Academies Press; 2005.

5. Hawkins NA, Smith T, Zhao L, et al. Health-related behavior change after cancer: results of the American Cancer Society’s studies of cancer survivors (SCS). J Cancer Surviv. 2010;4:20-32.

6. Katz ML, Reiter PL, Corbin S, et al. Are rural Ohio Appalachia cancer survivors needs different than urban cancer survivors? J Cancer Surviv. 2010;4:140-148.

7. Yabroff KR, Lawrence WF, Clauser S, et al. Burden of illness in cancer survivors: findings from a population-based national sample. J Natl Cancer Inst. 2004;96:1322-1330.

8. Sanson-Fisher R, Girgis A, Boyes A, et al; Supportive Care Review Group. The unmet supportive care needs of patients with cancer. Cancer. 2000;88:226-237.

9. Smith T, Stein KD, Mehta CC, et al. The rationale, design, and implementation of the American Cancer Society’s studies of cancer survivors. Cancer. 2007;109:1-12.

10. Geller BM, Mace J, Vacek P, et al. Are cancer survivors willing to participate in research? J Community Health. 2011;36: 772-778.

11. Crespi CM, Ganz PA, Petersen L, et al. Refinement and psychometric evaluation of the impact of cancer scale. J Natl Cancer Inst. 2008;100:1530-1541.

12. Campbell HS, Sanson-Fisher R, Turner D, et al. Psychometric properties of cancer survivors’ unmet needs survey. Support Care Cancer. 2010;19:221-230.

13. Hodgkinson K, Butow P, Hunt GE, et al. The development and evaluation of a measure to assess cancer survivors’ unmet supportive care needs: the CaSUN (Cancer Survivors’ Unmet Needs measure). Psychooncology. 2007;16:796-804.

14. Zebrack BJ, Ganz PA, Bernaards CA, et al. Assessing the impact of cancer: development of a new instrument for long-term survivors. Psychooncology. 2006;15:407-421.

15. Arora NK, Hesse BW, Rimer BK, et al. Frustrated and confused: the American public rates its cancer-related information-seeking experiences. J Gen Intern Med. 2008;23:223-228.

16. Hodgkinson K, Butow P, Hunt GE, et al. Breast cancer survivors’ supportive care needs 2-10 years after diagnosis. Support Care Cancer. 2007;15:515-523.

17. Harrison SE, Watson EK, Ward AM, et al. Primary health and supportive care needs of long-term cancer survivors: a questionnaire study. J Clin Oncol. 2011;29:2091-2098.

18. Rutten LJ, Squiers L, Treiman K. Requests for information by family and friends of cancer patients calling the National Cancer Institute’s Cancer Information Service. Psychooncology. 2006;15:664-672.

19. Beckjord EB, Arora NK, McLaughlin W, et al. Health-related information needs in a large and diverse sample of adult cancer survivors: implications for cancer care. J Cancer Surviv. 2008;2:179-189.

20. Rutten LJ, Arora NK, Bakos AD, et al. Information needs and sources of information among cancer patients: a systematic review of research (1980-2003). Patient Educ Couns. 2005;57:250-261.

21. Zebrack BJ, Block R, Hayes-Lattin B, et al. Psychosocial service use and unmet need among recently diagnosed adolescent and youg adult patients. Cancer. 2013;119:201-214.

22. Keegan TH, Lichtensztajn DY, Kato I, et al. Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study. J Cancer Surviv. 2012;6:239-250.

23. Barg KF, Cronholm PF, Straton JB, et al. Unmet psychosocial needs of Pennsylvanians with cancer: 1996-2005. Cancer. 2007;110:631-639.

24. American College of Surgeons. Cancer Program Standards 2012: Ensuring Patient-Centered Care. Chicago, IL: American College of Surgeons; 2011.

25. Hodgkinson K, Butow P, Fuchs A, et al. Long-term survival from gynecologic cancer: psychosocial outcomes, supportive care needs and positive outcomes. Gynecol Oncol. 2007;104:381-389.

26. Houts PS, Yasko JM, Kahn SB, et al. Unmet psychological, social, and economic needs of persons with cancer in Pennsylvania. Cancer. 1986;58:2355-2361.

27. Holland JC, Reznik I. Pathways for psychosocial care of cancer survivors. Cancer. 2005;104(11 suppl):2624-2637.

28. Stein KD, Syrjala KL, Andrykowski MA. Physical and psychological long-term and late effects of cancer. Cancer. 2008;112(11 suppl):2577-2592.

29. Park ER, Bober SL, Campbell EG, et al. General: Internist communication about sexual function with cancer survivors. J Gen Intern Med. 2009;24(suppl 2):S407-S411.

30. Girgis A, Adams J, Sibbritt D. The use of complementary and alternative therapies by patients with cancer. Oncol Res. 2005;15:281-289.

31. Gansler T, Kaw C, Crammer C, et al. A population-based study of prevalence of complementary methods use by cancer survivors: a report from the American Cancer Society’s studies of cancer survivors. Cancer. 2008;113:1048-1057.

32. Fouladbakhsh JM, Stommel M. Gender, symptom experience, and use of complementary and alternative medicine practices among cancer survivors in the U.S. cancer population. Oncol Nurs Forum. 2010;37:E7-E15.

33. Vermont Department of Financial Regulation. Vermont Household Health Insurance Survey (VHHIS). Vermont Department of Financial Regulation Web site. Available at: http://www.dfr.vermont.gov/insurance/health-insurance/vermont-household-health-insurance-survey-vhhis. Accessed July 15, 2014.

Data analysis

We summarized data by computing the percent of survivors who reported having each need (either met or unmet) and the percent for whom the need was unmet. The latter was computed both as a percent of all survivors and as a percent of those who had the need. We also calculated the percentage of survivors that had at least one need and at least one unmet need in each domain, as well as the average number of needs per survivor in each domain. We used SPSS for Unix, Release 6.1 (AIX 3.2)(IBM, Armonk, New York).

RESULTS

Of the 2005 cancer survivors invited into the study, 1668 responded, yielding a participation rate of 83%. TABLE 1 describes the self-reported demographic and cancer characteristics of participants in this study. Most respondents were female, ≥60 years old, urban dwellers, married or with a partner, well educated, and had household incomes of ≥$50,000. There were more breast cancer survivors than survivors of other cancers, and 14.6% of all survivors reported being diagnosed with more than one cancer. Cancer was diagnosed at stages 1 or 2 for 78.3% of the participants; 61.9% reported having undergone ≥2 treatment regimens.

The survey addressed needs in 5 domains: access to care and services (A); information (I); emotional, social, and spiritual (E); physical (P); and economic and legal (L). More than 80% of respondents reported having at least one need in the A, I, and E domains. The E domain had the most survivors with at least one unmet need (N=503), followed by the I (N=410) and P (N=375) domains.

Identifying unmet needs. TABLE 2 shows results for the specific questions within the domains in the order they were asked. Most participants who had a need also had it met. However, some needs that were not commonly reported were deemed unmet by a large proportion of those who expressed the need. For example, the A need for “A case manager to whom you could go to find out about services whenever they were needed” (A5) was reported by only 29.1% of survivors. But 32.1% of those reporting the need said it was unmet, which corresponds to 9.4% of all study participants having the need unmet. Similarly, the need for “More information about complementary and alternative medicine” (I3) was reported by about a quarter of the study population, 41.4% of whom (9.8% of all participants) reported it as unmet. In the P domain, the need for “Help to address problems with your sex life” (P4) was reported by only 26.5% of the respondents; yet 40.7% of those reporting the need had it unmet. Similarly, in the L domain, “Help with life insurance concerns as a result of your cancer” (L3) was only reported by 10.9% of the participants but was unmet for 46.4% of those who reported the need, or 5% of all study participants.

Most commonly expressed needs. TABLE 2 also identifies 12 needs reported by ≥50% of participants. Three of these needs were in the A domain, 6 in the I domain, and 3 in the E domain. The 2 most common needs related to A: the need “To feel like you were managing your health together with the medical team” (A3) was reported by 68.6% and was viewed as unmet by 5.2% of all respondents; the need for “Access to screening for recurrence or other cancers” (A7) was reported by 63.8% of the survivors but was deemed unmet by only 3.1% of all the respondents. “More information about possible after effects of your treatment” (I5) was a need for 63.2% that went unmet in 22.9% (14.4% of all participants). “Help managing your concerns about the cancer coming back” (E13) was reported as a need by 54.1% and as unmet by 11.8% of all participants.

The rank order of 7 unmet needs reported by ≥10% of the participants is shown in TABLE 3. Four of the 7 unmet needs were in the E domain. The most common unmet need in this domain was “Help reducing stress in your life” (E19).

Only 3 needs were both commonly reported and also unmet for at least 10% of the participants: “More information about possible after effects of your treatment” (I5), “More information about possible side effects of your treatment” (I4), and “Help managing your concerns about the cancer coming back” (E13).

DISCUSSION

Concern about cancer recurrence is  a prominent patient need that might be addressed most adequately in the course of usual primary care. The survey instrument we used to assess the needs of cancer survivors in a large community-based registry included a detailed list of potential needs generated, in part, by representatives of the survivor community. Most cancer survivor needs mentioned in this survey were met. However, some needs were not met for substantial proportions of respondents and should be examined carefully to determine whether services could be improved to better address them. This study was planned and implemented by researchers and cancer survivors using community-based participatory principles to learn about local needs. The results of this study may be generalizable to similar populations of survivors and will inform the survivorship goals for the Vermont State Cancer Plan and future Vermont Cancer Survivor Network activities.