Comprehensive assessment of cancer survivors’ concerns to inform program development
Background Health care professionals are caring for a growing number of diverse cancer survivors, often in an environment in which resources are limited. The identification of the most salient concerns of survivors is essential for targeted program planning and for providing quality care.
Objective To prioritize survivors’ physical, social, emotional, and spiritual concerns, and to assess the perceived importance of those needs and the extent to which staff were attentive to them. To demonstrate the usefulness of a broad survey approach.
Methods Surveys that used a quality-of-life framework to assess concerns were mailed to a convenience sample of 2,750 cancer survivors. Logistic regression models were used to identify associations with the 12 most highly rated moderate or high concerns.
Results A total of 1,005 surveys were returned for a 37% response rate. Fears of the cancer recurring (n = 486, 51%) and developing a new cancer (n = 459; 47.5%) were the 2 most prevalent concerns among respondents. Young age, unemployment, race other than white, and female sex were associated with greater moderate- or high-level concerns throughout the cancer trajectory. Spiritual and social concerns were least often attended to by staff.
Limitations Use of a nonvalidated survey and cross-sectional approach limited our ability to explore how concerns may change over the cancer trajectory.
Conclusion A comprehensive needs assessment is a valuable tool to inform survivorship and supportive care program development by highlighting common concerns, demographic and medical factors associated with specific concerns, and timing of moderate-or high-level concerns along the cancer trajectory.
Funding/sponsorship None
Accepted for publication February 21, 2017
Correspondence Susan R Mazanec, PhD, RN, AOCN; susan.mazanec@case.edu
Disclosures The authors report no disclosures/conflicts of interest.
Citation JCSO 2017;15(3):e155-e162
©2017 Frontline Medical Communications
doi https://doi.org/10.12788/jcso.0338
Related articles
Adolescent and young adult perceptions of cancer survivor care and supportive programming
Survivorship care planning in a comprehensive cancer center using an implementation framework
Submit a paper here
Complex cancer treatments, limited personnel resources, and a growing number of cancer survivors are challenging cancer health care professionals’ abilities to provide comprehensive care. Cancer survivors have a range of needs that extend over the cancer care trajectory and that represent physical, psychological, social, and spiritual domains. Numerous studies have explored supportive care needs and recent systematic reviews have highlighted the supportive care needs related to cancer1 and to specific cancer types, including prostate cancer,2 breast cancer,3 gynecologic cancer,4 hematological cancer,5 and lung cancer.6 However, reviews are limited in that they do not always assess needs across the cancer trajectory or identify demographic or clinical variables that are associated with needs. These data are needed to focus survivorship program development in cancer centers in order to target populations most likely at risk for unmet needs, identify what salient concerns to address, and to appropriately schedule supportive care programs.
The importance of assessing the patient’s subjective view of his/her needs or concerns is well acknowledged as being fundamental to patient-centered care.7 Clinicians routinely assess needs in practice using a variety of screening tools. However, there needs to be a broader assessment of concerns and needs in a population of survivors with mixed cancer diagnoses, along with their appraisal of how well their needs were addressed by their health care team, to provide an overall identification of gaps in supportive care. The primary purpose of the present study was to prioritize survivors’ most salient physical, social, emotional, and spiritual concerns or needs; ascertain survivors’ perceived importance of those needs and the extent to which our institution, the University Hospitals Seidman Cancer Center, was attentive to those needs; and to identify who might be at risk for having greater concerns. The overall goal was to use the data to inform survivorship and supportive care program development.
Methods
Design, sample and setting
We used a cross-sectional design. Surveys were mailed once to a convenience sample of 2,750 adult patients who had been seen in follow-up during the previous 2 years (2010-2011) at all clinical sites of University Hospitals Seidman Cancer Center, a Midwestern National Cancer Institute-designated Comprehensive Cancer Center. Patients who had a noncancer diagnosis were excluded. The distribution list was screened for deceased individuals and those patients who had multiple visits during the time period. The project was reviewed and approved as nonresearch by the Case Western Reserve University Cancer Institutional Review Board.
,Survey
An interdisciplinary team of clinicians, administrators, and researchers adapted the Mayo Clinic Cancer Center’s Cancer Survivors Survey of Needs8 to create a comprehensive survey for the cancer center. Input regarding the scope of the survey was sought from the Patient and Family Advisory Council of the cancer center. The survey, which was formatted for scanning purposes, consisted of 33 questions that were compiled into 4 sections. Sections 1 and 2 focused on demographic and treatment-related information, including use of community and hospital support services and preferences for follow-up care. In section 3, a quality-of-life framework was used to assess physical, social, emotional, and spiritual needs. Respondents were asked to rate their current level of concern for 19 physical effects, 10 social effects, 10 emotional effects, and 5 spiritual effects on a scale ranging from 0 (no concern) to 5 (extreme concern). In section 4, respondents were asked to indicate the importance of the cancer team addressing their physical, social, emotional, and spiritual needs. This was followed by their rating of the cancer team’s attention to their needs as Poor, Fair, Good, Excellent, or They did not ask about my needs. Respondents were asked about preferences for learning about physical, social, emotional, and spiritual effects. In addition to the 33 questions, there were 6 open-ended questions in which respondents were encouraged to share additional information about their needs, sources of support, and other concerns.
Procedures
Eligible respondents were mailed a cover letter explaining the survey from both the director and president of the cancer center, a survey, and a postage-paid return envelope. The option to respond to the survey by a telephone call to the director of the Office of Cancer Survivorship was offered in the cover letter.
Data analysis
Returned surveys were scanned into a Teleform database, verified, and exported into an SPSS data file. Data quality was checked by running frequency analyses and summarizing variables. Time-since-treatment responses were collapsed into 4 categories: on treatment, up to 2 years posttreatment, 2-5 years posttreatment, and more than 5 years posttreatment. Descriptive statistics were used to summarize demographic and medical characteristics of the respondents and to calculate the mean score for each concern for the total sample and then for each category of time since treatment. Because of the large number of respondents with breast cancer, the respondents were stratified into two groups, one of breast cancer the other of nonbreast cancer respondents. Then, the Mann-Whitney test was performed for each concern to examine differences between respondents with and without breast cancer.
