Running head: CANCER SUPPORT SERVICES SURVEY

Perceived social Support and Quality of Life among Clients Participating in
Cancer Support Services
Jennifer Severance
Arizona State University

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CANCER SUPPORT SERVICES SURVEY

Abstract
Purpose: To collect and analyze participant demographic information and explore use of
instruments to measure perceived social support and quality of life at a local cancer support
program. Specific objectives included: 1) Gather and analyze participant demographic
information and program utilization by participants for a non-profit cancer support agency, 2)
Assess the extent to which those using the support programs experience perceived social support
(PSS) and quality of life (QOL), and 3) Assess the utility of the survey process and selected
instruments to guide program planning.
Background: Obtaining the diagnosis of cancer is traumatic, but support groups assist in
emotional healing among group members. There is strong evidence correlating support group
participation with PSS and QOL. The Wilson and Cleary model of QOL clearly links social
support and QOL and provided the conceptual framework for this project.
Methods: A survey for self-reported participant demographics, support activities, QOL scores,
and PSS scores was implemented. Both online and pencil and paper surveys were available.
Instruments included Flanagan Quality of Life Scale (Cronbach’s α = .82 to .92) and the
Multidimensional Scale of Perceived Social Support Scale (Cronbach’s α = 0.91) and a
demographic survey created for this project.
Outcomes: All but one survey was completed online (n=48). Respondents were primarily white
(44%), female, cancer free at the time of the survey, and over the age of 55. QOL and PSS scores
within this sample emulated previous research of correlations between instruments and people
with chronic illnesses.
Conclusion: Correlations of sample demographics and instrument scores reflected current
literature; this project validates an effective and affordable means to evaluate program
effectiveness. Future use of the survey is to better tailor services to meet the objectives of the
agency
to improve QOL for all individuals affected by cancer.

Keywords: Cancer, support group, quality of life, perceived social support

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Cancer Support Survey
Chapter One
Cancer is an emotional rollercoaster for individuals diagnosed with the disease and their
loved ones. Support groups are available through a number of community agencies including
specialized cancer support agencies. These groups provide educational as well as, psychological
and emotional support services. Cancer support groups give individuals the ability to transform
negative events into healing opportunities through communication and social relationships. This
chapter is an introduction to the project’s background, problem, search strategy, evidence
synthesis, and purpose.
Background and Significance
Diagnosis of cancer is a devastating event worldwide, even in developed countries.
Experts predict about 40% of American’s will be diagnosed with cancer at some point in their
lifetime; with breast, prostate, and lung, each accounting for more than four thousand new cases
yearly (NIH National Cancer Institute, 2015). Cancer is the second leading cause of death in the
United States (US) and it is estimated there will be half a million deaths and 1.6 million new
cases of cancer within the US by the end of 2015 (Siegel, Miller, & Jemal, 2015).
Cancer diagnosis used to be a notification of a life cut short but there is an increasing
number of survivors living years to decades after diagnosis of cancer. Modern treatments have
decreased the risk of dying from cancer by 22% between 1991 and 2011 (NIH National Cancer
Institute, 2015). Decreasing the death rate and improving targeted treatments has increased
survival rates in almost all cancers. From 1975 to 2010, five-year survival rate increased by 20%
for all, but cervical cancer (NIH National Cancer Institute, 2015). Although there is no cure,

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advances in health care have allowed cancer to be approached as a chronic disease as more
people.
Chronic diseases not only require physical, mental, and emotional adjustments for the
individual diagnosed with the disease, but families and significant others are also significantly
impacted. Caregiver burden, depression, and stress increased as well as decreased social
functioning, physical health, and QOL (Stamataki et al., 2014). Regardless of length of life after
diagnosis, millions of cancer patients and their families go through emotional turmoil when
facing life altering, poor prognosis. There are multiple methods to cope with the stress of a
cancer diagnosis for cancer patients and their family members; the use of social support is a
common intervention.
Perceived Social Support
The American Psychological Association defines social support as a structural format,
such as resources, material aid, social integration, and informational aid that others provide to
help a person cope with stress (APA, 2015). Perceived social support (PSS) is the subjective
interpretation to the relationship transaction between individuals (Zimet, Dahlem, Zimet, &
Farley, 1988). Functional components of social support comprise transactions between
individuals in the acts of sharing, reciprocating, and advising within a network that improves
psychological well-being and physical health (Reblin & Uchino, 2008).
Social support groups increase PSS and an increase in individual QOL. Experiencing low
levels of perceived social support (PSS) increased the risk of deteriorating health. Social support
has been found to have an inverse relationship with inflammatory processes. Social
disconnectedness has been associated with higher levels of chronic stress, systematic
inflammation, and cancer progression (Goyal, Terry, Jin, & Siegel, 2014; Hughes et al., 2014;

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Swede et al., 2014; Yang, LI, & Frenk, 2014). ). . Lack of PSS increases the risk of illness and
death. In a recent meta-analysis, researchers reported a 25-30% increase in mortality associated
with social isolation, loneliness, and living alone (Holt-Lunstad, Smith, Baker, Harris, &
Stephenson, 2015).
Quality of Life
As the population of long-term cancer survivors grows, addressing QOL and its effect on
overall health has become increasingly important. Quality of life is a multi-dimensional concept
with domains related to physical, mental, emotional, and social functioning and is one of Healthy
People 2020 four overarching goals (Centers for Disease Control and Prevention [CDC], 2013).
Quality of life (QOL) measures subjective evaluation of personal experiences, health states, and
perceptions in forming personal life expectations (Burckhardt & Anderson, 2003). Increased
QOL has been found to precipitate disease resistance, resilience, and self-management through
protective characteristics and conditions that foster health (Healthy People 2020, 2015).
Although multiple studies link the value of QOL to individual characteristics, social connections,
health status, and perceptions, the accuracy of the predictions remains in question.
Quality of life and Perceived Social Support
Positive correlations between QOL and use of PSS are well documented. When
participating in support groups, interactions and relationship bonding augments members’
perception and outlook on life (Applebaum et al., 2014; Brand, Barry, & Gallagher, 2014;
Matthews, Tejeda, Johnson, Berbaum, & Manfredi, 2012). Multiple researchers identifying
relationships between social support and health also find quality, or perception of received social
support, to be better predictors of emotional health than number of support entities (Ozbay et al.,
2007; Penedo et al., 2012; Roohafza et al., 2014).

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Support groups commonly used as a means of providing social support. They generally
offer emotional and educational support and provide a safe place to discuss difficult issues.
Support groups gather people with similar life situations to communicate advice, comfort and
encouragement for one another through social relationships and interpersonal transactions
(Breastcancer.org, 2015; Glanz, Rimer, & Viswanath, 2008; Oxford Dictionar ies, 2015). Cancer
support groups usually differentiate by diagnosis or focus, such as age, race, or location.
Available online, face to face, or by telephone, support groups improve QOL for participants
within various cultures (Bouma et al., 2015; Huang & Hsu, 2013; Sammarco & Konecny, 2010).
Most support groups are free to participants, with financing supported by donations and charity.
Previous studies have found consistent trends of individual characteristic that correlate
with PSS and QOL. Studies have found that support group participants are primarily middleaged, well-educated, middle class females (Grande, Myers, & Sutton, 2005; Im et al., 2007;
Sautier, Mehnert, Höcker, & Schilling, 2014).
Project Site and Internal Evidence
There are many support resources for Arizona residents including the American Cancer
Society, Cancer Support Community, and Cancer.Net, which provide in-person or online
delivery methods. A cancer support agency, with its main campus located in downtown Phoenix,
Arizona, provided the site for this project. The stated mission of the organization is to ensure all
people impacted by cancer are empowered by knowledge, strengthened by action, and sustained
by community. This agency serves family, friends, caregivers, and people with any stage of
cancer. Services include support groups, education, social connections, healthy lifestyle actives,
and resources. All programs are evidence-based, led by professionals, and are at no cost to the
participants. This 501(c)3 non-profit organization and services are financially provided by

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individual and corporate contributions. There is one full time employee, the Program Director,
with all other positions being part-time or volunteer. This agency requested assistance to collect
information related to its participants including: demographic information and impact of support
services programming on participants.
PICOT
This inquiry lead to the clinical relevant PICOT question, “does the use of social support
services, compared to not using social support, affect perceived social support and quality of life
for patients with cancer and/or their caregivers?”
Search Strategy
Research relevant to the PICOT question was searched within Cumulative Index to
Nursing and Allied Health Literature (CINAHL), PubMed (Medline), PsycINFO (ProQuest), and
the Cochrane Library (Appendices A-D). A mix of fourteen published studies and systematic
reviews were collected for this review.
CINAHL (EbsoHOST) outcomes were best reached with the use of Boolean/Phrase.
Beginning search terms were support service, social support, and quality of life, which resulted
in 2,174 results, as seen in appendix A. The search performed used the following addition search
terms: cancer, oncology to in retrieving 464 peer-reviewed articles. Narrowing the time frame to
cover the last five years, January 2010 through July 2015, in US adult population, and written in
English produced 70 peer-reviewed articles that allowed abstract review. Within the final
fourteen articles, this database search yielded six of those articles.
PubMed (Medline) search began with the use of various search term truncations of MeSH
Major topics, MeSH terms, and Pubmed’s “Other terms” for the following words: social

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services, social support, quality of life, produced 78,936 results. Additional terms, such as
oncology, cancer, quality life index reduced the list to 822 articles; see appendix B. Limiting the
time parameters of publishing within the last five years and written in English with adult
populations, decreased the list to 18 abstracts for review. Of the fourteen articles, four new
articles were retrieved from this database. Four articles were recurring articles from the CINAHL
search collection.
Within PsycINFO, 33,360 journal articles were retrieved using the following search
terms: social support, social service, and social group. Incorporating oncology, cancer, quality
of life, well being, peer support, adult outpatient in the US with the first terms, resulted in a
reduction to 21,660 articles for review. Limitations of time, format, and language: 2010-present,
peer reviewed journal articles, and English; decreased results to a manageable 37 articles, see
Appendix C. This search found one of the final fourteen papers appraised within this review.
The electronic search of the Cochrane Library yielded 9,809 publications when social
support, social services, support group, and perceived social support were searched (see
appendix D). When oncology, cancer, quality of life, and psychosocial terms were added to the
search, 287 studies were collected. Eliminating the terms psychological, HIV, exercise, and
diabetes reduced the search to 36 articles. Limitations to the time range (January 2010 thru July
2015) and gave the final 23 abstracts to review. None of the final articles came from this
database. One of the final articles came from an ancestral search of several articles within this
database, which is discussed later in this paper.
Ancestral hand search was conducted due to a reduced number of articles specific to the
terminology of PSS and QOL. While searching, most of cancer support programs were well
studied in the 1990’s and early 2000’s. Recent articles involved other diseases, psychotherapy,

CANCER SUPPORT SERVICES SURVEY
and various medical systems that do not translate to useful evidence for participants of this
cancer support agency. Ancestry search was conducted on nine articles found in the databases
and the articles with related topics. One article was found for final reviewing as a result of this
search technique. Flowchart of this process is found in Appendix E Figure 1.
Evidence Synthesis
For this review, 13 studies and one literature review highlight the characteristics to
affecting QOL through social support (Appendix F, Table 1). Of the 14 studies, most are
observational studies with low levels of evidence; level III on the National Health and Medical
Research Council (NHMRC) evidence hierarchy (NHMRC, 2009). Due to the qualitative nature
and number of possible factors impacting PSS and QOL , high risk of bias were necessary to
filter out possible characteristics that influence QOL in participants of cancer support services.
The use of chi-square and the independent t-test demonstrated demographics of the intervention
groups and control groups were not significantly different in any of the studies (Appendix F,
Table 1).
Valid and reliable evaluation tools were used in 11 studies. Although various tools were
used, FACT and medical outcome study short form health survey were used to evaluate QOL of
these eleven studies (Appendix F, Table 1). Heterogeneity of methodology, intervention, tools,
and participants did not allow for pooling of results. Correlation and multivariate regression
models were used to find characteristics that correlated to QOL or PSS statistically.
Between all the collected studies, homogeneity is the positive correlation PSS has on
QOL in people affected by cancer (Appendix G, G2). The systematic review performed a
descriptive analysis of eleven studies with the same conclusion with the addition of coping as a
mediating factor, which is consistent with the results reported by Paterson et al (2013) and Zhou

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et al. ( 2010). Despite the evidence of benefits, the use of support groups was reported to be a
small percentage of the cancer-affected population in several studies (Leow, Chan, & Chan,
2014; Morse, Gralla, Petersen, & Rosen, 2014). Another repeating report was the main supply of
social support for survey participants was by spouses and family, more than any other source
(Leow et al., 2014; Leung, Pachana, & McLaughlin, 2014; Salonen, Rantanen, KellokumpuLehtinen, Huhtala, & Kaunonen, 2014; Sammarco & Konecny, 2010).
Evidence review through critical appraisal and synthesis found individual characteristics
that may predict low levels of QOL or PSS. Due to the large degree of heterogeneity between
studies, each demographic category suspected to affect QOL or PSS was collected in table 2 for
synthesis (Appendix I). To be included into table 2, the characteristic had to be identified by two
or more studies to validate correlations on QOL. Regardless of direction, characteristics that
were reported to have a correlation with QOL were independently included. Studies that
collected the information about individual characteristics but did not calculate correlations were
also included (Appendix I, Table 2). Characteristics found to be relevant to QOL were calculated
by dividing the number studies that reported correlating factor to the total number of studies that
addressed that independent factor. Once placed on the table, differences between caregivers and
patients emerged.
Due to the large degree of heterogeneity and limiting number among the review studies,
some characteristics are unable to confirm their importance in affecting QOL. Characteristics,
such as, occupation, religion, optimism, cancer stage, and insurance had no clear relation to QOL
although, this may be due to a large degree of heterogeneity among studies and limited number
of studies. Marriage, cancer type, and cancer treatment type did not seem to affect QOL in either
population. Race and length of time with cancer diagnosis correlate more strongly with

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caregivers’ than with patients’ QOL. Isolating only the studies that surveyed cancer patients,
several characteristics were identified to affect QOL. In the specific populations, income,
employment, age, gender, education, depression status, and comorbidities have a correlation on
patient QOL and PSS. Some studies focused exclusively on gender specific populations and
others reported caregivers were mainly female, leaving gender and cancer types as characteristics
that might have been skewed in this review. The results of this review compile the necessary
information needed for a cancer support survey to establish characteristics influencing
participant QOL and identifying areas for improvement.
Purpose Statement
There are three specific aims of this project: 1) To gather and analyze demographic
information and program utilization by participants 2) To assess the extent to which perceived
social support and QOL correlates with programs designed to increase social support, and 3) To
pilot the survey process, questions, and instruments for future impact studies.

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Chapter 2
This chapter will discuss the conceptual framework and how it guided the project.
Project methods, statistical analysis, and results will also be included. Discussion covers
summary of result interpretations and links to previous literature.
Conceptual framework
The Health-Related Quality of Life Model (Wilson & Cleary, 1995) was used to guide
this project (Figure 1). The model depicts the relationships among these variables that affect
QOL. The theory is based on viewing health as a continuum of biological, social, and
psychological complexities that are dominant causal associations (Wilson & Cleary, 1995). The
model illustrates the impact of individual and environmental characteristics that link
conceptually specific measures to a person’s QOL. Although individual characteristics may not
be modifiable, the environment and symptom management allow room for interventions.
In a study to determine impediments most associated with QOL in people with advanced
cancer, Rodriguez and associates (2013) found that among 65 variables, the most significant
predictor of QOL was social support. Perceptions of general health and energy followed. Social
support is a modifiable environmental characteristic that has demonstrated potential to improve
QOL and PSS in those affected by cancer.
Evidence Based Practice Model
The Iowa model of evidence-based practice (EBP) model delineates the procedures to
successfully execute organizational changes utilizing evidence. Outlined in Figure 2, the Iowa
model, designed by the University of Iowa Hospitals and Clinics (2015) describes seven steps to
introduce, develop, and evaluate evidence-based practice. Permission to use this model in written
material was obtained from the University of Iowa Hospitals and Clinics. Within the Iowa

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model, the first step is to use problem or knowledge-focused triggers as catalyst for process
improvement that encompass clinical and operational systems of an organization through
research findings (Titler et al., 2001). The model outlines a process of decision points in
evaluating sufficient research, feedback loops and the process to conduct own research (Titler et
al., 2001; Titler & Moore, 2010). With the absence of internal data, the survey serves to collect
the internal benchmark data for this organization (Figure 2, problem-focused triggers, #3). It is
imperative to complete the benchmark data in order to proceed with future interventions.
Project Methods
Ethics
This project was approved by the Arizona State University Institutional Review Board.
Site authorization was also obtained from the organization.
Setting
The setting for this project was a non-profit cancer support agency cancer support agency
located in the Phoenix metropolitan area. The agency offers services in a homelike setting that is
informal, welcoming, and hospitable. There are multiple services available to any person
affected by cancer, regardless of type, stage, or relationship to the diagnosed. The organization
offers support services, healthy lifestyle activities, educational seminars, social connections, and
resources. Services are evidence based, professionally facilitated, and are no cost to participants.
There are online, in-person, and subsidiary programs to fit the needs of those participating. Eight
hundred members that attended the 1,074 program sessions available in 2015.
Participants
Participants were18 years of age and older adults participating in the services offered by
this cancer support agency. This includes people with cancer, caregivers, friends, and family of

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people with cancer. Responses from minors, those unable to read or understand English, and
anyone not using the services offered by this cancer support agency within the last year were
excluded.
Procedure
To assess characteristics of individuals participating in programs and the number and
types of programs being utilized by participants, the student project leader created a survey. The
survey was used to collect self-reported participant demographics and participation in cancer
support activities. The survey was available online or on paper from January 28, 2016 through
March 8, 2016. Online surveys were emailed to participants through the organization’s e-Blast,
delivering the online survey link to 4,000 emails. The email had a cover letter with a link to the
SurveyMoz survey. Paper surveys had a printed cover letter and were available only at the main
campus (downtown, Phoenix, AZ) during open administration hours (Monday through Friday,
9am-5pm). Card-sized flyers were publicly displayed on tables of the main campus. Program
leaders, class instructors, and volunteers verbally informed the availability of the surveys.
Surveys were expected to take approximately 30 minutes to complete the demographic
survey and measures of PSS and QOL. Using SurveyMoz premium plan, responses were
anonymous, saved on a secure server and downloaded directly into SPSS. For paper survey
responses, a designated locked ballot box (metal) was available for completed surveys. The
student project leader entered raw data into the SPSS manually for paper surveys.
To encourage participation, the agency gave a five-dollar restaurant coupon from a local
restaurant to all individuals completing the survey. The coupons were donated to the
organization as 500 five-dollar paper coupons from the restaurant prior to the planning of this
project. A thank you page appear at the end of the online survey, which participants presented to

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main campus volunteers to receive the coupon. The thank you page was not recorded, saved, or
linked to any response. For paper surveys, the thank you page was the last page of the survey.
Once completed and participants inserted paper surveys into the locked ballot box, the
participant was given a coupon by agency volunteer staff.
Outcomes measures
Participant activity, demographics, QOL, and PSS were measured. The Multidimensional
Scale of Perceived Social Support (MSPSS) is a 12–item self reported, time effective scale that
distinguishes PSS from three strong factorial sources: significant other; family and friends.
Internal reliability by Cronbach’s coefficient alpha is .91, with significant other, family, and
friends’ alphas .90, .94, and .95, respectively (Dahlem, Zimet, & Walker, 1991). The scale
performs adequate stability at retesting 2 to 3 months later, with r = 72 to.85 (Zimet, Dahlem,
Zimet, & Farley, 1988).
The Flanagan Quality of Life Scale (QOLS) is a 16-item questionnaire that measures
health-related quality of life. Construct validity assessments of the scale showed high internally
consistent (α = .82 to .92) and high test-retest reliability over three weeks in stable chronic illness
groups, r = 0.78 to r = 0 .84 (Burckhardt & Anderson, 2003). The scale has a fairly stable factor
structure across diverse adult samples in health, culture, and gender.
Both scales were selected due to consistent demonstration of strong reliability and
validity among diverse populations. Various populations, such as cancer patients, chronic
diseases, caregivers, greater than 11 years of age, and multiple countries used these scales.
Unlike other scales, these questionnaires are used within healthy and ill populations without need
to change to another format or version. Both questionnaires are public domain, do not require

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formal permission, and are free of charge (Burckhardt, Anderson, Archenholtz, & Hägg, 2003;
Multidimensional Scale of Perceived Social Support (MSPSS), n.d.).
Data collection and analysis plan
Data collection was conducted January 28, 2016 to March 8, 2016. SurveyMoz
transferred raw data to Excel files for data cleaning and instrument scoring calculations. The
QOLS scores, ranging from 16-112, were totaled with the higher scores indicating higher quality
of life. Missing data was replaced with entering the mean score for the missing items as
instructed for scoring the QOLS. The MPSS was segmented into subscales for identifying
specific areas that lack support and the scale used the grand total for overall scale of PSS.
Significant other subscale summed the items 1, 2, 5, & 10, and then divided by 4. The family
subscale, items 3, 4, 8, & 11 summed, and then divided by 4. Friends’ subscale summed the
items 6, 7, 9, & 12, and then divided by 4. Total Scale added across all 12 items, then divided by
12. Descriptive and frequency statistics were performed for demographics. The excel file merged
into SPSS (v23) to perform Spearman and Pearson correlations. Statistical tests were executed
with a statistical probability of 95% confidence interval (p <0.05).
Project Results
A total of 71 (57%) surveys were returned; final sample size for analysis was 48 surveys
after eliminating those that did not fit the inclusion criteria. Most people who responded to the
survey were people diagnosed with cancer (87.2%; n=41) and currently cancer free (43.6%;
n=17). Respondents were mainly white (93.5%; n=43), retired (43.8%; n=21), female (76.6%;
n=36), and 70.8% (n=34) were 55 years of age and older. See Appendix K, table 3 and table 4
for a complete description of the sample. A chi-square goodness fit test was completed to
compare several demographic frequencies (type of respondent, age ranges, gender, race,

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ethnicity, and cancer type) to characteristics of participants in earlier local and national agency
surveys. Based on earlier findings, this survey sample appears to be comparable and an accurate
representation of this agency’s population with the exception of the distribution of participants
that identify as Hispanic. The proportion of Hispanic participants in this study exceeded the
survey results from the local cancer support group and was lower than the proportion of Hispanic
participants in the national survey. Significant deviation from theses hypotheses was found at the
local level (Χ2 (1) = 4.67, p = .031) and on the national levels (Χ2 (1) = 6.48, p = .011). The 11%
of respondents within this project were Hispanic, in between the expected local and national
values. No other significant deviations from the hypothesized values were found.
All but one of the 71 responses were completed online, 57% of responses were the day of
the E-blast announcement. One survey was filled out on paper and manually entered. The survey
took an average of 11 minutes for respondents to complete, with most completing in seven
minutes.
Descriptive statistics on the QOL score and MSPSS scores are provided in table 5 in
Appendix K. QOL scores ranged from 56-102 with a mean 84 (SD 12.2). The average score was
consistent with other chronic illness groups, such as systemic lupus erythematous, rheumatoid
arthritis, and chronic obstructive pulmonary disease (Burckhardt & Anderson, 2003). This survey
sample appeared to be a fair reputation of cancer effected populations.
Multiple Spearman’s rho correlation coefficients and chi-square tests of independents
was calculated for relationships between all variables and a.) QOL total score; b.) MSPSS overall
score; c.) MSPSS significant other subscale score; d.) MSPSS family subscale score; and e.)
MSPSS friend subscale score; according to appropriate levels of measurement. Refer to
Appendix K, table 6 for coefficient values. The following variables were found not to have

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significant correlations with the instruments: age, ethnicity, living alone, veteran status,
relationship status, race, working status, education, types of cancer, months of having cancer,
reoccurrence of cancer, months participating in the agency’s programs, and personal diagnosis of
cancer. In this population, these variables appear to be independent characteristics.
A Spearman rho correlation coefficient was calculated for the relationship between
participant’s QOL total score and their MSPSS sores (overall score and subscales for significant
other, family, and friends). A statistically significant positive correlation was found between
OQL and all MPSS overall score (r (34) = .458, p < .005) see table 6. This indicated a significant
relationship between PSS and QOL; participants who perceive higher social support tend to have
higher QOL.
A stronger relationship was noted between the MSPSS subscale scores. A Spearman rho
correlation coefficient calculated a statistically significant, very strong correlation found between
MSPSS overall score and MSPSS family subscale score (r (34) = .890, p < .001). The strong
relationship similar replicates the results supporting validity and reliability of the MSPSS
instrument (Dahlem et al., 1991;Zimet et al., 1988). This survey resulted in supporting another
established MSPSS’s correlation between friend subscale and gender. A chi-square test of
independence was calculated comparing the scoring differences in men and women. A
significant interaction was found (Χ2 (1) = 24.56, p = .026), along with, differences in female
mean score 5.6 (SD .199) and male mean scores at 4.86 (SD .442). Similar to results found by
Osman and associates (2014), these divergences demonstrated internal variance among gender
bias within the friends subscale.
A spearman’s rho correlation coefficient was calculated for the relationship between age
ranges and attending different type of healthy lifestyle events. A moderate correlation was (r

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(46)= .306, p=. 034). Increase in age was associated to attending more different types of healthy
lifestyle events.
A spearman’s rho correlation coefficient was calculated for the relationship between
program frequency and the amount of time going to the agency. A moderately negative
correlation was found to be significant (r (26)= -.407, p=. 032). A decrease in program
attendance frequency as time passes.
No significant relationships were found between the instruments and program frequency
or number of different programs. Appendix K, table 7. These results are consistent with the
Ozbay and associates (2007), findings and concluded the number of different support programs
or the frequency of attendance did not influence the perception of social support.
Empowerment was an important value stated within the project site’s mission. At the
request from the project site, perceived health control was measured and correlated to various
scores and activity participation. The question within the survey asked, “To what extent do you
feel you are in control with your health care? 0 (not at all) – 5 (complete control).” A spearman’s
rho correlation coefficient showed a statistically significant weak correlations between perceived
health control and 1) MSPSS overall, 2) friend, and 3) family scores, 4) the attendance to
different lifestyle programs and 5) frequency of attendance to healthy lifestyle activities. Refer to
table 8 for individual spearman’s rho correlation coefficients. The significant showed the
perception of health control was positively related to overall PSS, family and friend PSS and
healthy lifestyle activities.
Discussion
The correlations between QOLS, MSPSS overall score and MPSS subscales scores were
similar to the current literature. Consistent with previous support group studies, other authors

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concluded positive correlation existed between PSS and QOL in people affected by cancer
(Rodriguez, Mayo, & Gagnon, 2013; Paterson, Jones, Rattray, & Lauder, 2013; Zhou et al.,
2010). A stronger relationship was noted among the MSPSS sores, which replicated the results
that supported validity and reliability of the MSPSS instrument (Dahlem et al., 1991; Zimet et
al., 1988). Additionally, this survey’s outcomes supported another established MSPSS’s
correlation between male and female scores under the friend subscale. Osman and associates
(2014) found these divergences between the sexes demonstrated internal variance among gender
bias within the friends subscale. The authors’ deduced genders view the importance of PSS
received from friends differently in which women weight friend social support perception more
heavily than men. Between program activity and PSS scores, no significant correlations were
found within this surveyed population; validated the number of support sources did not influence
PSS. With the sample representing similar demographics and responses emulating previous
research, this survey process and instruments are acceptable means to evaluate PSS and QOL of
participants using cancer support programs.
Conclusion
This project gathered baseline data about a cancer support agency’s participants through a
survey format, piloting a survey process and instruments to measure PSS and QOL. Program
participants’ demographics reflected previously surveyed local and national populations.
Instrument scores and correlations were consistent with previous literature, substantiating
theories, such as the number of support does not affect PSS, and people with high PSS tend to
have high QOL, The average survey time to complete was two thirds less than predicted. Online
survey reached thousands through email and was the preferred method to completing the survey.
At $115 this process of evaluations was a reasonable expense for the agency.

CANCER SUPPORT SERVICES SURVEY

21

CANCER SUPPORT SERVICES SURVEY

Chapter 3
Intro
The current and potential impacts this project brought to the support agency are justified
by the financial implications it took to perform a pilot survey. In coordinating this project,
reflection of student leader barriers are discussed. Project sustainability was solidified with
future studies with this agency and ASU. As with any implementation, there were gaps in
knowledge and reported limitations within this project.
Impact

While this cross-sectional study does not distinguish causes contributing to QOL or PSS
directional effects, piloting the survey process, questions, and statistics may contribute to this
organizations ability to better evaluate and tailor programs to enhance PSS and QOL. Such
results may contribute to better reporting of program impact. Reporting impact study outcomes
increases donor contributions and elevates the agency’s reputation (America’s Charities, 2014).
Project Costs and Sustainability
Printing cost at a local Aphagraphics for 100 reminder cards and 30 consent, survey, and
instrument packets was $80. The lockbox cost $35 from Amazon. At the cost of $115 and a few
hours of set up time, this project is reasonably obtainable for most non-profit organization. Once
established, the cost to repeating the survey is needed only for printing cost and advertising the
survey.
Conclusion
This project gathered baseline data about cancer support agency’s participants through an
online survey format in preparation for following studies to bring clarity of the impact the

CANCER SUPPORT SERVICES SURVEY

23

agency’s social support programs have on participants. Further work is needed to correlate
cancer support program utilization, the QOLS and the MSPSS scores to ensure quality programs
that maintain the agency’s mission, “So that no one faces cancer alone.”

CANCER SUPPORT SERVICES SURVEY

24

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CANCER SUPPORT SERVICES SURVEY

Appendix A

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Appendix B

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Appendix C

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Appendix D

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Appendix E Figure 1. Study flow diagram

124,279
Articles

23,233
Articles

Search terms: social support, social
service, quality of life, support group,
and perceived social support

Refined with addition search terms: oncology, cancer,
quality life index, well being, peer support, adult outpatient,
and psychosocial

Limited to English Language, published between 1/1/20108/1/2015, peer reviewed articles. Removed exercise, HIV, metal
illnesses, and psychological interventions.

148 Abstracts
Reviewed

13 articles found with PSS and
QOL measured from people
affected by cancer in an
outpatient setting

Ancestral Search
Conducted on 9 articles,
contributed 1 article

14 accepted
articles for
review

CANCER SUPPORT SERVICES SURVEY

36

Table 1
Appendix F Evaluation Tables

Citation
(Brand, Barry, &
Gallagher, 2014)
Social support
mediates the
association
between benefit
finding and
quality of life in
caregivers
Country: Ireland
Funding: None
Bias:
Non-response
16%

Conceptual
Framework
Social support
mediates
benefit
finding to
QOL

Design /
Methods
Cross-sectional
survey
Measurementof-mediation
design
Purpose:
Examine the
positive
psychosocial
predictors and
indirect effects
between benefit
finding and
QOL in CG

Recruited:
word of mouth
and CG support
groups

Sample /
Setting
n: 84 CG
Mainly white,
female,
married
IC: Not
disclosed, but
assumed CG
of mental and
physical
difficulties
EC: not
disclosed
Attrition:
One time 92question
survey
available 3month period.
Dates not
given
84% response
rate

Major
Variables
IV1: sociodemographics
DV1: QOL
DV2: SS
DV3: benefit
finding
DV4:
optimism

Measurement

Data analysis

Findings

Practice application

AC-QoL
questionnaire (α
= .93)

Used SPSS

NS attending
support group
and those not
attend

LOE= III-3

19-item Medical
Outcome Study
Social Support
Scale (α = .96)
Stress-Related
Growth Scale (α
= .94) test–retest
reliability (r =
.95)
Life Orientation
Test–Revised
(r = .79) (α =
.78)

Bivariate
correlation
analyses
Indirect
effects
analysis
Bootstrap
procedure
Independent t
-test

Benefit finding
(IV)  social
support
(Mediator) 
QOL (DV)
(b = .90, t (84)
= 3.39, p <
.001).
Optimism
(Mediator) 
benefit finding =
NS

Strengths- positive affect
of benefit finding and
PSS on CG QOL
Weaknesses- changed
Life Orientation test
weakening validity, n
was from support groups
and various CG types
Conclusion- benefit
finding  the effect on
CG PSS, thus  QOL
Application- There is a
relationship b/w SS and
QOL

QoLsocial
supportbenefit
= NS

AA: African American; avg: average; b/w: between; BL: baseline; BrCA: breast cancer; CA: cancer; CG: caregiver; DS: depressive symptoms; DV: dependent variables; dx:
diagnosed; EC: exclusion criteria; edu: education; f/u: follow up; FL: Florida; FT: full time; HNC: head and neck cancer; HRQoL: health related quality of life; hx: history; IC:
inclusion criteria; ID: identify; IL: Illinois; IV: independent variables; LOE: levels of evidence; MHQOL: mental health quality of life; MI: mental illness; MO: Missouri; n:
sample size; NCI: National Cancer Institute; NJ: New Jersey; NS: non significant; NY: New York; PHQOL: physical health quality of life; pop: population; PSS: perceived
social support; pt: patient; QOL: quality of life; SO: significant other; SS: support services; tx: treatment; UK: United Kingdom; USA: United States of America ; Χ2: Chi square
test; v: version; vs: versus; yr: year; α: Cronbach’s alpha; β: slope coefficients; : increased; : decreased; : leads to; >: greater than; <: less than; =: equals

CANCER SUPPORT SERVICES SURVEY

(Paterson, Jones, Social support
Rattray, &
theory and
Lauder, 2013)
Buffer theory
of social
Exploring the
support
relationship
between coping,
social support
and healthrelated quality of
life for prostate
cancer survivors
Country: UK
Funding: PhD
doctoral
fellowship by the
University of
Dundee, School
of Nursing and
Midwifery and
the Alliance for
Self-Care
Research.
Bias: low level
and limited
evidence

Systematic
review of LOE
III
Purpose: ID SS
affects coping
and QOL

Setting:
support group
meetings
n: 11 studies
3 cross sec
3 intervention
5 prospective
longitudinal
0 qualitative
Total pop:
1553
Mainly USA
studies pop:
white,
married, and
well educated
IC: SS
measured
affecting
HRQoL,
English,
prostate CA pt
only

37

IV1: SS
DV1: HRQoL
DV2: coping

Descriptive

Used Endnote
X4
Kappa
reviewers’
consistency

Good level of
agreement
(κ = 0.922, p <
.001)
Received SS not
predict HRQoL
PSS and
satisfaction
related to
HRQoL
PSS and HRQoL
mediated by
positive coping
(Sobels test, Z=
-2.29,
p < .05)

LOE= II
Strengths- collection of
SS and QOL in prostate
CA. theory driven
Weaknessesheterogeneous
methodologies, absence
of multidimensional
inventory of SS
Conclusion- weak
evidence need more
research
Highly distressed men/
have inadequate support
provisions benefit from
SS intervention
Application- measure
quality verse quantity of
SS = PSS

EC: study
protocol,
other CA
sites,

Setting: not
restricted
(Matthews,
Contextual
Cross-sectional n: 248 AA
IV1:
Demographics
Used
Poor PHQOL:
LOE= III-3
Tejeda, Johnson, model of
correlation
244 White
demographics
Stata./SE v11
unemployed,
AA: African American; avg: average; b/w: between; BL: baseline; BrCA: breast cancer; CA: cancer; CG: caregiver; DS: depressive symptoms; DV: dependent variables; dx:
diagnosed; EC: exclusion criteria; edu: education; f/u: follow up; FL: Florida; FT: full time; HNC: head and neck cancer; HRQoL: health related quality of life; hx: history; IC:
inclusion criteria; ID: identify; IL: Illinois; IV: independent variables; LOE: levels of evidence; MHQOL: mental health quality of life; MI: mental illness; MO: Missouri; n:
sample size; NCI: National Cancer Institute; NJ: New Jersey; NS: non significant; NY: New York; PHQOL: physical health quality of life; pop: population; PSS: perceived
social support; pt: patient; QOL: quality of life; SO: significant other; SS: support services; tx: treatment; UK: United Kingdom; USA: United States of America ; Χ2: Chi square
test; v: version; vs: versus; yr: year; α: Cronbach’s alpha; β: slope coefficients; : increased; : decreased; : leads to; >: greater than; <: less than; =: equals

CANCER SUPPORT SERVICES SURVEY

Berbaum, &
Manfredi, 2012)

HRQoL
(AshingGiwa, 2005)

Correlates of
quality of life
among African
American and
white cancer
survivors

Telephone
survey study
Purpose: assess
sociodemographic,
clinical, and
psychosocial
charateristics
affecting QOL
CA pt.

Country: USA,
IL

Recruited:
hospitals and
state CA
registry

Funding: grants
from the NCI:
R01CA77501A1 and
R25CA057699

Population,
age 26->75
yr.
IC: dx with
breast,
prostate, or
colorectal CA
in last 3 yrs.
EC: >36
months from
dx, other CA
site, deceased,
non-English
speaking

38

IV2: clinical
charateristics
IV3: CArelated stress
IV4:
psychosocial
charateristics
DV1:
PHQOL
DV2:
MHQOL

Attrition rate:
19.5%

(Zhou et al.,
2010)

Buffering
theory of
social support

Longitudinal
interviews

Multidimensional
Scale of
Perceived Social
Support (α =
0.75)
Functional
Assessment of
Chronic Illness
Therapy-Spiritual
Charateristics
Scale (α = 0.87)

Attrition:
One time 6090 minute
survey. Dates
not given

Bias: self
reported, AA
selected 1st then
white to match

Medical
Outcomes Study
36-item Shortform Health
survey (α = 0.84)

Χ2
2-sample
Student t test
Multivariate
regression
models

uninsured,
comorbidities,
 life
disruptions due
to tx, and 
daily stress
(Race NS)
Poor MHQOL:
AA,
unemployed, 
daily stress, 
dx stress, 
coping resource
use
Better MHQOL:
 edu,
perceived social
support, 
spirituality
scores

Setting: phone
interviews

AA and
perceived SS
affected
MHQOL(β =
1.32, p < 0.001)

n: 180
pop: male,
age > 50 yr.

CA type and
gender: NS for
both
QOL associated
SS (β = 0.53, p
< 0.001)

IV1: SS
IV2: coping

Strengths- large n and
more generalizable, AA
pt matched closely with
white pt. measured
psychosocial variables
Weaknesses- mainly self
reported, pt knowledge
of CA stage, measured
stress not valid tool,
stress-QOL relationship
needs more research
Conclusions- ID general
and culturally specific
predictors of QOL in AA
CA pt
Applicationcharateristics involved
with QOL- sociodemographics

SS: ENRICHD
Used SPSS
LOE= III-2
Social Support
v16
Instrument (α =
DV1: QOL
0.80)
AA: African American; avg: average; b/w: between; BL: baseline; BrCA: breast cancer; CA: cancer; CG: caregiver; DS: depressive symptoms; DV: dependent variables; dx:
diagnosed; EC: exclusion criteria; edu: education; f/u: follow up; FL: Florida; FT: full time; HNC: head and neck cancer; HRQoL: health related quality of life; hx: history; IC:
inclusion criteria; ID: identify; IL: Illinois; IV: independent variables; LOE: levels of evidence; MHQOL: mental health quality of life; MI: mental illness; MO: Missouri; n:
sample size; NCI: National Cancer Institute; NJ: New Jersey; NS: non significant; NY: New York; PHQOL: physical health quality of life; pop: population; PSS: perceived
social support; pt: patient; QOL: quality of life; SO: significant other; SS: support services; tx: treatment; UK: United Kingdom; USA: United States of America ; Χ2: Chi square
test; v: version; vs: versus; yr: year; α: Cronbach’s alpha; β: slope coefficients; : increased; : decreased; : leads to; >: greater than; <: less than; =: equals

CANCER SUPPORT SERVICES SURVEY

Longitudinal
effects of social
support and
adaptive coping
on the emotional
well being of
survivors of
localized prostate
cancer.
Country: USA,
FL
Funding: NCI
grant
1P50CA84944
Bias: no control
group.

Purpose: how
SS and coping
affect
emotional wellbeing
Recruited:
advertisements;
referrals, and
mailings from
state CA
registry

IC: survivors
localized
Prostate CA,
radical
prostatectomy
or
radiotherapy
<18 months, >
9th grade
reading level
EC: active
hormone tx,
hx other CA,
mental illness,
cognitive
impairment.
2 yr study
study.
Attrition rate
and
explanation
not disclosed

39

DV2: physical
function
DV3:
Demographics

Coping: 28-item
Brief COPE (α =
0.75)
Physical
function: EPIC or
UCLA-PCI (α =
0.71-0.80)
QOL: FACT-G
(27-item) (α =
0.83)

Independent
samples t test

Coping
associated SS (β
= 0.36, p < 0.01)

Strengths- critical post-tx
period, longitudinal
study, prostate CA,

Pearson zeroorder
correlation

 SS =  QOL
(p < 0.01)

Sobel test

Ethnicity NS

Weaknesses- SS prior to
CA tx not measured,
other forms of SS not
asked, n too small for
Sobel test

Post hoc
analyses

Conclusions- SS
predictor of QOL in
prostate CA men
Application- SS
networking and coping
skills needed in critical
post tx period, support
SS groups  QOL

Interviewed
BSL, 3
month, 10
month, and 2
yrs post BSL
Setting: not
disclosed
(Applebaum et
 optimism
n: 168
IV1:
Life Orientation
Used SPSS
LOE= III-3
Cross section
SS and
al., 2014)
allow for SS
Pop
mainly
Optimism
Test-Revised
v20
of pts in RCT
optimism
to have 
white female
IV2: SS
AA: African American; avg: average; b/w: between; BL: baseline; BrCA: breast cancer; CA: cancer; CG: caregiver; DS: depressive symptoms; DV: dependent variables; dx:
diagnosed; EC: exclusion criteria; edu: education; f/u: follow up; FL: Florida; FT: full time; HNC: head and neck cancer; HRQoL: health related quality of life; hx: history; IC:
inclusion criteria; ID: identify; IL: Illinois; IV: independent variables; LOE: levels of evidence; MHQOL: mental health quality of life; MI: mental illness; MO: Missouri; n:
sample size; NCI: National Cancer Institute; NJ: New Jersey; NS: non significant; NY: New York; PHQOL: physical health quality of life; pop: population; PSS: perceived
social support; pt: patient; QOL: quality of life; SO: significant other; SS: support services; tx: treatment; UK: United Kingdom; USA: United States of America ; Χ2: Chi square
test; v: version; vs: versus; yr: year; α: Cronbach’s alpha; β: slope coefficients; : increased; : decreased; : leads to; >: greater than; <: less than; =: equals

CANCER SUPPORT SERVICES SURVEY

Optimism, social
support, and
mental health
outcomes in
patients with
advanced cancer.

Country: USA,
NY
Funding: NCI
grant
1RO1CA128187
and
T32CA009461-26

Bias:
convenience
sampling of
those agreed to
psychotherapy

impact on
anxiety,
depression,
hopelessness,
and QOL

MeaningCentered Group
Psychotherapy
(MCGP) prior
to therapy
Purpose: role of
optimism as a
moderator of
the relationship
between social
support and
anxiety,
depression,
hopelessness,
and QOL
among
advanced CA
pts
Recruited:
outpt CA
clinics in NY,
posted flyers or
physician
referral b/w
8/2007-5/2012

40

(>70%), age
>18 yr.
IC: stage III

IV3:
demographics

or IV solid
tumor CAs or
nonHodgkin’s
lymphoma,
ambulatory,
English
speaking

DV1:
hopelessness
DV2: anxiety
DV3:
depression
DV4: QOL

EC: cognitive
impairment,
psychosis, or
physical
limitation
Attrition:
2 yr study.
Attrition rate
explanation
not disclosed
Setting:
psychotherapy
office

(LOT-R), 10item scale
(α = 0.78)

Separate
hierarchical
regression
analyses

Hospital Anxiety
and Depression
Scale (HADS) is
a
14-item selfrated

Steps
1:
demographic
variables
2: added
optimism
3: added SS,
4: added the
interaction of
optimism and
SS.

Beck
Hopelessness
Scale 20
true/false
questions
(KR-20 mostly in
the .90s)
Duke-UNC
Functional Social
Support
Questionnaire
(DUFSS) 8-item
multidimensional
(α = 0.80–0.85)
test–test
reliability (0.50–
0.77)

Pearson
product
moment
correlation
coefficients

moderately
correlated
(r=0.34,
p<0.01)
Optimism
significantly
associated 
anxiety,
depression,
hopelessness
and  QOL (β
=_0.500,
β =_0.611, β
=_0.659, β =
0.538, ps<0.001)
 SS and 
QOL (β =

0.204, p =
0.003)

Strengths- large n, IV
demographics that reflect
SS, QOL, and optimism
Weaknessesdemographics not
generalizable,
convenience sampling,
participants agreed for
psychotherapy
Conclusions- SS and
optimism important to
QOL
Application- screening

for these variables to
identify those with low
SS and optimism to SS
services

McGill Quality
of Life
Questionnaire
(α > 0.70)

AA: African American; avg: average; b/w: between; BL: baseline; BrCA: breast cancer; CA: cancer; CG: caregiver; DS: depressive symptoms; DV: dependent variables; dx:
diagnosed; EC: exclusion criteria; edu: education; f/u: follow up; FL: Florida; FT: full time; HNC: head and neck cancer; HRQoL: health related quality of life; hx: history; IC:
inclusion criteria; ID: identify; IL: Illinois; IV: independent variables; LOE: levels of evidence; MHQOL: mental health quality of life; MI: mental illness; MO: Missouri; n:
sample size; NCI: National Cancer Institute; NJ: New Jersey; NS: non significant; NY: New York; PHQOL: physical health quality of life; pop: population; PSS: perceived
social support; pt: patient; QOL: quality of life; SO: significant other; SS: support services; tx: treatment; UK: United Kingdom; USA: United States of America ; Χ2: Chi square
test; v: version; vs: versus; yr: year; α: Cronbach’s alpha; β: slope coefficients; : increased; : decreased; : leads to; >: greater than; <: less than; =: equals

CANCER SUPPORT SERVICES SURVEY

(Leow, Chan, &
Chan, 2014)
Predictors of
Change in
Quality of Life
of Family
Caregivers of
Patients Near the
End of Life With
Advanced
Cancer
Country:
Singapore
Funding:
Singapore
Cancer Society
(grant WBS:R545-000-040592)
Bias: High
attrition,
different medical
system,
convenience
sample

Buffering
Theory of
social support

Longitudinal
survey,
convenience
sample
Purpose: ID
change in QOL,
SS and
spirituality and
predictors of
QOL in CGs of
CA hospice

n: 93
pop: avg age
49
50% FT work.
70% female,
61% caring
for their
parents

Conducted:
7/2011 to
6/2012

IC: age > 21
yr. primary
family CG of
stage 4 CA
hospice pt,
English or
Mandarin

Recruited: staff
referral from 4
hospice homes,
CG psycho-edu
classes by nurse

EC: domestic
helpers, CG
with MI
cognitive
impairment
Attrition:
48.7% due to
pt death,
illness, or CG
to busy
2-month
study.
Attrition rate
explanation
not disclosed

41

IV1: sociodemographics
DV1: QOL
DV2: SS
DV3:
Spirituality
DV4: pt
caregiving
demand

Social Support
Questionnaire
12-item, 6-point
Likert scale
(α = .91-.93)
Caregiver QOL
35 items, 5-point
Likert scale
(test-retest: 0.95,
α = .91), validity
of 89%.
Caregiving
Demands Scale.
5 items, 4-point
Likert scale
Spiritual
Perspective Scale
10 items on 6
point Likert scale
(test-retest of
0.83 to 0.93, α >
.90) content
validity of 97%

Used SPSS
v18
Χ2
Paired
Student t test
Independent
t test
Analysis of
variance
(ANOVA)
Correlations

 # of SS and
SS satisfaction
(r = 0.36, p <
.000)

LOE= III-2

 SS
satisfaction: CG
female, married,
older, with
chronic illness,
pt older,
hospitalized < 2
months ago.

Weaknesses- high
attrition rate, pt death 
unpredictable (28%
deaths),

 # of SS: CG
with high edu
and had religion

Strengths- CG and pt
surveyed, over 2 yrs,

Conclusions- SS
important to CG QOL
Application- CG
described and
importance of CG SS
satisfaction.

CG  SS
satisfaction (β
= .60, p = .000)
+ religion (β =
.55, p = .001)
Had  QOL
CG of female
only CA 
QOL
(β = -.33, p =
.03)

AA: African American; avg: average; b/w: between; BL: baseline; BrCA: breast cancer; CA: cancer; CG: caregiver; DS: depressive symptoms; DV: dependent variables; dx:
diagnosed; EC: exclusion criteria; edu: education; f/u: follow up; FL: Florida; FT: full time; HNC: head and neck cancer; HRQoL: health related quality of life; hx: history; IC:
inclusion criteria; ID: identify; IL: Illinois; IV: independent variables; LOE: levels of evidence; MHQOL: mental health quality of life; MI: mental illness; MO: Missouri; n:
sample size; NCI: National Cancer Institute; NJ: New Jersey; NS: non significant; NY: New York; PHQOL: physical health quality of life; pop: population; PSS: perceived
social support; pt: patient; QOL: quality of life; SO: significant other; SS: support services; tx: treatment; UK: United Kingdom; USA: United States of America ; Χ2: Chi square
test; v: version; vs: versus; yr: year; α: Cronbach’s alpha; β: slope coefficients; : increased; : decreased; : leads to; >: greater than; <: less than; =: equals

CANCER SUPPORT SERVICES SURVEY

42

Setting: home
hospice

(Morse, Gralla,
Petersen, &
Rosen, 2014)
Preferences for
cancer support
group topics and
group
satisfaction
among patients
and caregivers
Country: USA,
NY
Funding:
NexCura and
North Shore
Long Island
Jewish Health
System
Bias:
Non-response
number
unavailable

Social support
theory

Crosssectional
survey design
Purpose:
explore pt and
CG preferences
for group
content, guide
development
and
implementation
of CA SS
groups
Recruited:

e-mail
solicitation

Baseline and
2 months post
n: 3,723
pop: avg age
58, white
(94%), female
(70%),
partnered
(76%), not
living alone
(83%), >
some college
(91%), pt
(90%),
hormonal CA
(65%)
IC: users of
NexCura
Cancer
Profiler
website
CA pt and
CG, age > 18
yr
EC:
unfinished
survey

IV1:
demographics

A list of 26
Possible topics

Used (not
mentioned)

pt vs CG: pt 
PSS [t(3,448) =

LOE= III-3

DV1: PSS
DV2: Topics
importance
DV3: group
satisfaction

Multidimensional
Scale of
Perceived Social
Support 12-item
(α not reported)

Χ2

3.22, p <
0.001]

Strengths- largest n
survey

PSS positive in
both groups

Weaknesses- not
demographics were
compared with PSS
scores, demographics not
transfer well to general
pop, internet only
survey, self reported

Two-sample t
t test
Fisher’s exact
test

Important
topics
pt: sexuality
CG: dealing
with anxiety,
depression,
stress and
stress
management,
pain and its
control,
changes in
relationships
and roles, endof-life care,
and
bereavement

Conclusions- different
topics of importance,
few in SS groups and
half not satisfied.
Application- support
directed to pt not SO,
topics differ in
importance, and many
are not satisfied with SS
groups (no explanation/
correlations)

Attrition:

AA: African American; avg: average; b/w: between; BL: baseline; BrCA: breast cancer; CA: cancer; CG: caregiver; DS: depressive symptoms; DV: dependent variables; dx:
diagnosed; EC: exclusion criteria; edu: education; f/u: follow up; FL: Florida; FT: full time; HNC: head and neck cancer; HRQoL: health related quality of life; hx: history; IC:
inclusion criteria; ID: identify; IL: Illinois; IV: independent variables; LOE: levels of evidence; MHQOL: mental health quality of life; MI: mental illness; MO: Missouri; n:
sample size; NCI: National Cancer Institute; NJ: New Jersey; NS: non significant; NY: New York; PHQOL: physical health quality of life; pop: population; PSS: perceived
social support; pt: patient; QOL: quality of life; SO: significant other; SS: support services; tx: treatment; UK: United Kingdom; USA: United States of America ; Χ2: Chi square
test; v: version; vs: versus; yr: year; α: Cronbach’s alpha; β: slope coefficients; : increased; : decreased; : leads to; >: greater than; <: less than; =: equals

CANCER SUPPORT SERVICES SURVEY

43

SS group
satisfaction
(25% of n):
pt: 43%
CG: 33%

Attrition rate/
explanation
not disclosed

(Pulgar, Alcala,
& Reyes del
Paso, 2015)
Psychosocial
predictors of
quality of life in
hematological
cancer
Country: Spain
Funding: not
disclosed
Bias: different
medical system,
small n

Neg
emotional
states + 
optimism and
SS=  stress
and  QOL

Cross sectional
study
Individual
interviews
performed by
an expert
clinical
psychologist
Purpose: QOL
predictors via
sociodemographics
Recruited: from
hospital staff

Setting:
online
n: 69
pop: most age
40 - >70 yr,
married, <1yr
from dx,
currently
receiving
chemo only
IC: dx
hematological
CA, adults
EC: in
remission,
admitted to
hospital,
cognitive
deficits
Attrition:
No refusals
Setting:
hospital

IV1: sociodemographics
IV2:
DV1: QOL
DV2: SS
DV3:
optimism
DV4:
stressors

Short-Form
Health Survey
(SF-36, Version
1-Spanish)
(α = 0.7 and
0.94)
Social Support
Scale (AS-25)
(α = 0.87)
Life Orientation
Test
(α = 0.87)
Hospital Anxiety
and Depression
Scale (α = 0.820.84)
Stressors and
Coping
Strategies for
Cancer Inventory
(α = 0.80)

Hierarchical
multiple
regression
analysis
Step-wise
multiple
regression
analysis
collinearity
statistics

Predictors:
depression,
social support,
optimism, neg.
emotions, total #
disease-related
stress situations,
coping
strategies,
relaxation, and
passivity.

LOE= III-3

Age neg.
association to
physical and
social function

Conclusions-physical
and social areas are
greatly affected in CA
pts, age and time 
QOL
SS, edu, partner =
QOL

High edu inverse
association to
pain (β = 0.29, r2
= 0.06, p = .015)
CA dx is
negatively
associated with
general health (β
= - 0.34, r2 =
0.11, p = .003)

Strengths- regression
analysis of charateristics
of CA QOL. Better if n
was >100.
Weaknesses- small n, too
many predictors, unable
to see causations, PSS
results limited

Application- suggests
strengthening social
support networks, which
improves vitality

Depression
AA: African American; avg: average; b/w: between; BL: baseline; BrCA: breast cancer; CA: cancer; CG: caregiver; DS: depressive symptoms; DV: dependent variables; dx:
diagnosed; EC: exclusion criteria; edu: education; f/u: follow up; FL: Florida; FT: full time; HNC: head and neck cancer; HRQoL: health related quality of life; hx: history; IC:
inclusion criteria; ID: identify; IL: Illinois; IV: independent variables; LOE: levels of evidence; MHQOL: mental health quality of life; MI: mental illness; MO: Missouri; n:
sample size; NCI: National Cancer Institute; NJ: New Jersey; NS: non significant; NY: New York; PHQOL: physical health quality of life; pop: population; PSS: perceived
social support; pt: patient; QOL: quality of life; SO: significant other; SS: support services; tx: treatment; UK: United Kingdom; USA: United States of America ; Χ2: Chi square
test; v: version; vs: versus; yr: year; α: Cronbach’s alpha; β: slope coefficients; : increased; : decreased; : leads to; >: greater than; <: less than; =: equals

CANCER SUPPORT SERVICES SURVEY

44

explains 36% of
the variance
Illness 27% of
the variance

(Sammarco &
Konecny, 2010)
Quality of life,
social support,
and uncertainty
among Latina
and Caucasian
breast cancer
survivors: a
comparative
study
Country: USA,
NY and NJ
Funding:
Research
Foundation of
the City
University of
New York: PSCCUNY grant
#68169-00-37

The Mishel
Uncertainty in
Illness Theory
(Mishel,
1988, 1990)
and the
Ferrans
Conceptual
Model of
QOL
(Ferrans,
1996)

Descriptive,
comparative
study
Purpose:
examine
differences in
Latina and
Caucasian
BrCA survivors
in PSS, QOL,
uncertainty, and
demographics

n: 280 total
182
Caucasian and
98 Latina
pop: avg age
57 yr.
IC: adult,
Latina or
Caucasian
BrCA
survivor

Mailed
questionnaire

EC: any other
ethnicity

Recruited: staff
gave study
packets to pt.

Attrition:
31% response
rate (one time
survey)

IV1:
demographics
DV1:
uncertainty
DV2: PSS
DV3: QOL

Mishel
Uncertainty in
Illness Scale–
Community
Form
(α = 0.91)

Stats program
not disclosed,
statistician
used

The Ferrans and
Powers QOL
Index–CA
Version III
(α = 0.95)

Mean scores

Social Support
Questionnaire
(α = 0.93)

Χ2

SDs and
ranges
Independent
sample t tests

PSS is positively
associated with
vitality, explains
12% of the
variance
Ethnicity and
marital status
(Χ2 [5, n = 280]
= 20.27, p =
0.01)
White married:
69%
Edu and
ethnicity (Χ2 [3,
n = 279] =24.62,
p <0.001)
Only primary
edu Latina: 17%
Ethnicity and
depression (Χ2
[1, n = 278]
=18.71, p
<0.001)
White  PSS (p
= 0.04)

LOE= III-3
Strengths- USA,
compares whites to
Latinas,
Weaknessesconvenience sampling,
assuming family and
cultural differences (not
questioning authority,
illness is punishment) are
reasons for
Conclusions- cultural
values, comorbidities,
and edu level likely
influence PSS
uncertainty, and QOL
Application- remove
barriers for family
involvement and
understand personal

Attrition rate
explanation
not disclosed
AA: African American; avg: average; b/w: between; BL: baseline; BrCA: breast cancer; CA: cancer; CG: caregiver; DS: depressive symptoms; DV: dependent variables; dx:
diagnosed; EC: exclusion criteria; edu: education; f/u: follow up; FL: Florida; FT: full time; HNC: head and neck cancer; HRQoL: health related quality of life; hx: history; IC:
inclusion criteria; ID: identify; IL: Illinois; IV: independent variables; LOE: levels of evidence; MHQOL: mental health quality of life; MI: mental illness; MO: Missouri; n:
sample size; NCI: National Cancer Institute; NJ: New Jersey; NS: non significant; NY: New York; PHQOL: physical health quality of life; pop: population; PSS: perceived
social support; pt: patient; QOL: quality of life; SO: significant other; SS: support services; tx: treatment; UK: United Kingdom; USA: United States of America ; Χ2: Chi square
test; v: version; vs: versus; yr: year; α: Cronbach’s alpha; β: slope coefficients; : increased; : decreased; : leads to; >: greater than; <: less than; =: equals

CANCER SUPPORT SERVICES SURVEY

Bias: crosssection design

(Leung, Pachana, Buffering
& McLaughlin,
model of
2014)
social support
Social support
and healthrelated quality of
life in women
with breast
cancer: A
longitudinal
study
Country:
Australia
Funding:
Australian
Government
Department of
Health and
Ageing
Bias: different
medical system,

Longitudinal
Prospective
cohort study
Purpose:
relationships
among a dx of
BrCA, SS, and
(HRQOL)
3 yrs before dx
(baseline) and 3
years after (f/u)
Recruited:
Australian
Medicare
database mailed
surveys

Setting:
private
hospitals and
American CA
units NY& NJ
n: 412
pop: age 1875 yr.
IC: 1946–

1951 birth
cohort of the
Australian
Longitudinal
Study on
Women’s
Health who
self-reported a
new diagnosis
of BrCA
between
1998 and
2007
EC: surveys
with missing
data
Surveys from

1996 to 2010
Attrition: 17%

45

Latina 
uncertainty (p =
< 0.001)

IV1: Time
IV2: sociodemographics
DV1: QOL
DV2-4: PSS
DV2:

emotional/
informational
support
DV3:

affectionate
support/
positive
social
interaction
DV4:
tangible
support

Self reported
19-item Medical
Outcomes Study
Social Support
Survey
(α = 0.90–0.96)

Used SPSS
v19
Structural
equation
model

ANOVAs
Medical
Outcomes Study
36-item Short
Form Health
Survey

Pearson’s
correlation

White  QOL
(p= 0.011)
No change with
PSS over time
Married = 
PSS and  QOL
High PSS
(baseline)
predicted higher
QOL at f/u

limiting beliefs for
culturally competent care

LOE= III-2
Strengths- collected predx HRQoL, rural pop
and urban, highly diverse
population
Weaknesses- HRQoL
not CA version, other
variables (CA stage),
poor mental health
underrepresented, did not
follow men CAs
Conclusions- better

social support was
associated with better
quality of life
Application-

emotional/informational
SS and affectionate
SS/positive social
interaction, rather than
tangible SS, were more
important in improving
QOL

6 yr study.
AA: African American; avg: average; b/w: between; BL: baseline; BrCA: breast cancer; CA: cancer; CG: caregiver; DS: depressive symptoms; DV: dependent variables; dx:
diagnosed; EC: exclusion criteria; edu: education; f/u: follow up; FL: Florida; FT: full time; HNC: head and neck cancer; HRQoL: health related quality of life; hx: history; IC:
inclusion criteria; ID: identify; IL: Illinois; IV: independent variables; LOE: levels of evidence; MHQOL: mental health quality of life; MI: mental illness; MO: Missouri; n:
sample size; NCI: National Cancer Institute; NJ: New Jersey; NS: non significant; NY: New York; PHQOL: physical health quality of life; pop: population; PSS: perceived
social support; pt: patient; QOL: quality of life; SO: significant other; SS: support services; tx: treatment; UK: United Kingdom; USA: United States of America ; Χ2: Chi square
test; v: version; vs: versus; yr: year; α: Cronbach’s alpha; β: slope coefficients; : increased; : decreased; : leads to; >: greater than; <: less than; =: equals

CANCER SUPPORT SERVICES SURVEY

46

Attrition
related to less
edu, not being
born in
Australia, and
being a
current
smoker, in all
cohorts, and
with poorer
health in the
older cohort

(Huang & Hsu,
2013)

Concept of
social support
(Cohen and
Social support as Wills,
a moderator
1985)
between
depressive
SS related to
symptoms and
DS and QOL
quality of life
outcomes of
breast cancer
survivors.
Country: Taiwan
Funding: not
disclosed
Bias: different
medical system

Model based,
descriptive
cross-sectional
Purpose:
examine
demographics
DS, PSS, and
QOL in BrCA
survivors, and
whether SS
moderated
effects of DS
on QOL
Recruited: Face
to face survey
interviews,
physician
referral

Setting: home
n: 150
pop: avg age
52, married, <
9 yrs edu.,
stage II BrCA
IC: BrCA
survivor, > 18
yr age,
Chinese or
Taiwanesespeaking
EC:
dementia,
psychosis,
severe
concomitant
disease,
extensive care

IV1:
demographics
DV1: DS
DV2: PSS
DV3: QOL

Center for
Epidemiological
StudiesDepression
(α = 0.94)
Interpersonal
Support
Evaluation List
(α =0.82-0.86)

Used SPSS
v17
Pearson
product
moment
correlations

35% n had DS.

LOE= III-3

Age = QOL
and DS

Strengths- PSS, DS, and
QOL complex
moderation models

Edu = QOL
Married = DS

t-test
QOL= PSS

Weaknesses- no dx
depression, unable to
generalize (Eastern vs
Western med)

ANOVA
Medical
Outcomes Study
36-Item Short
Form
Health
Questionnaire
(α = 0.75-0.89)

PSS = DS
Structural
equations and
hierarchical
regression
analyses

PSS explained
30% of the
variance on
QOL

Conclusions- DS –PSS-QOL
Application- PSS is
mediator between DS
and QOL, devise
effective programs that
can address distressed
DS and QOL

Attrition:
AA: African American; avg: average; b/w: between; BL: baseline; BrCA: breast cancer; CA: cancer; CG: caregiver; DS: depressive symptoms; DV: dependent variables; dx:
diagnosed; EC: exclusion criteria; edu: education; f/u: follow up; FL: Florida; FT: full time; HNC: head and neck cancer; HRQoL: health related quality of life; hx: history; IC:
inclusion criteria; ID: identify; IL: Illinois; IV: independent variables; LOE: levels of evidence; MHQOL: mental health quality of life; MI: mental illness; MO: Missouri; n:
sample size; NCI: National Cancer Institute; NJ: New Jersey; NS: non significant; NY: New York; PHQOL: physical health quality of life; pop: population; PSS: perceived
social support; pt: patient; QOL: quality of life; SO: significant other; SS: support services; tx: treatment; UK: United Kingdom; USA: United States of America ; Χ2: Chi square
test; v: version; vs: versus; yr: year; α: Cronbach’s alpha; β: slope coefficients; : increased; : decreased; : leads to; >: greater than; <: less than; =: equals

CANCER SUPPORT SERVICES SURVEY

47

Attrition rate
explanation
not disclosed

(Salonen,
Rantanen,
KellokumpuLehtinen,
Huhtala, &
Kaunonen, 2014)
The quality of
life and social
support in
significant others
of patients with
breast cancer: A
longitudinal
study.

Ferrans’s
definition of
QOL and
Kahn’s (1979)
theory of
social support

Quasi-random
longitudinal
study
Purpose: QOL
and received SS
changes in SO
of BrCA pt 1
wk and 6
months post
surgery

Setting: two
teaching
hospitals,
outpt
departments
n: 165
pop: avg age
52, mainly
men/spouses,
employed, no
young
children
IC: SO of
BrCA surgery
participating
in BrCA pt
longitudinal
study

SO did not get
intervention
(only BrCA pt
got
physiotherapist) EC: minority

Country: Finland
Funding:
Competitive
research funding
of the Pirkanmaa
Hospital District

Recruited: by
nurses in 2
hospitals after
BrCA surgery

Attrition:
6-month
study.
Attrition rate
or explanation
not disclosed

IV1:
demographics
IV2:
DV1: QOL
DV2:
received SS
from network
DV3:
received SS
from nurses

Ferrans and
Powers Quality
of Life Index –
CA
Version 70-item
Kahn’s scale
(network SS)
(α = 0.78 to 0.88)
Social support
from nurses’
scale
(α = 0.74 to 0.90)

Used SPSS
v20
Pearson’s chisquare test or
Fisher’s exact
test
MannWhitney Utest
Logistic
regression
models
Wilcoxon’s
Signed Ranks
test

Sources of SS:
spouse/partner,
children and
friends

LOE= III-1
Strengths- validated
QOL scale, longitudinal
design

Retired  QOL
(OR 3.62, 95% CI
1.07–12.2)

 Risk in 
socio-economic
QOL
(OR 3.33 95% CI
1.02–10.9)

SO of pt
receiving
intervention 
socio-economic
QOL (p= 0.01)

Weaknesses- sensitivity
of QOL scale, no BL
measurements prior to
BrCA surgery; report of
nearly significant = need
longer timeline
Conclusions- pt socioeconomic QOL effects
SO QOL. SO did not
receive SS they needed
during study. Need
interventions  QOL for
family
Application- evaluating
SO QOL is essential
when evaluating CA pt
QOL

Bias: different
Setting:
medical system
survey
AA: African American; avg: average; b/w: between; BL: baseline; BrCA: breast cancer; CA: cancer; CG: caregiver; DS: depressive symptoms; DV: dependent variables; dx:
diagnosed; EC: exclusion criteria; edu: education; f/u: follow up; FL: Florida; FT: full time; HNC: head and neck cancer; HRQoL: health related quality of life; hx: history; IC:
inclusion criteria; ID: identify; IL: Illinois; IV: independent variables; LOE: levels of evidence; MHQOL: mental health quality of life; MI: mental illness; MO: Missouri; n:
sample size; NCI: National Cancer Institute; NJ: New Jersey; NS: non significant; NY: New York; PHQOL: physical health quality of life; pop: population; PSS: perceived
social support; pt: patient; QOL: quality of life; SO: significant other; SS: support services; tx: treatment; UK: United Kingdom; USA: United States of America ; Χ2: Chi square
test; v: version; vs: versus; yr: year; α: Cronbach’s alpha; β: slope coefficients; : increased; : decreased; : leads to; >: greater than; <: less than; =: equals

CANCER SUPPORT SERVICES SURVEY

(Penedo et al.,
2012)
Perceived social
support as a
predictor of
disease-specific
quality of life in
head-and-neck
cancer patients

Country: USA,
FL
Funding: not
stated
Bias:

PSS predicts
QOL beyond
disease and tx
charateristics

Prospective
study
Purpose:
changes of PSS
from pre-tx to
post-tx to
predict QOL
among HNC pt
Recruited: CA
clinic during
appointment

completed at
home, mailed
back
n: 32
pop: avg age
57, mainly
white men,
married,
employed,
surgery only
tx
IC: HNC
(stages I–IV)
awaiting
surgery or
radiation, 9thgrade reading
level
EC:
chemotherapy
tx, cognitive
impairment,
active
psychiatric
symptoms in
last 3 months
Attrition:
6-week study.
Attrition rate:
22% due to tx
changes,

48

IV1:
demographics
DV1: QOL
DV2: PSS

ENRICHD
Social Support
instrument
(α = 0.88)
Functional
Assessment of
Cancer Therapy–
Head & Neck
(α = 0.80)

Used SPSS
v14
Pairedsamples t tests
Pearson
correlations
One-way
analysis of
variance
Hierarchical
regression
analyses

Stages III–IV 
QOL (F [1,27] =
5.0; p < .04)
tx with radiation
 QOL (F
[1,29] = 5.0; p <
.04)
Younger age and
employment 
QOL
PSS related to
post-tx QOL (r
= 0.51; p < .01)
PSS  post tx
(F [31] = –2.71,
p < .01).

LOE= III-3
Strengths- validated
QOL and PSS scale,
tested prior to tx.
Weaknesses- small and
heterogeneous n; short
term f/u, no controls
Conclusions-  social
isolation risk factor of 
QOL post-tx. PSS
important target for
interventions
Application- PSS
changes with tx, need
interventions to preserve
SS networks prior to tx

Adjustments for
dx and tx
charateristics:
PSS predictor of
post-tx QOL
(β=0.47, p < .01)
Unidirectional
relationship
between PSS
and QOL

AA: African American; avg: average; b/w: between; BL: baseline; BrCA: breast cancer; CA: cancer; CG: caregiver; DS: depressive symptoms; DV: dependent variables; dx:
diagnosed; EC: exclusion criteria; edu: education; f/u: follow up; FL: Florida; FT: full time; HNC: head and neck cancer; HRQoL: health related quality of life; hx: history; IC:
inclusion criteria; ID: identify; IL: Illinois; IV: independent variables; LOE: levels of evidence; MHQOL: mental health quality of life; MI: mental illness; MO: Missouri; n:
sample size; NCI: National Cancer Institute; NJ: New Jersey; NS: non significant; NY: New York; PHQOL: physical health quality of life; pop: population; PSS: perceived
social support; pt: patient; QOL: quality of life; SO: significant other; SS: support services; tx: treatment; UK: United Kingdom; USA: United States of America ; Χ2: Chi square
test; v: version; vs: versus; yr: year; α: Cronbach’s alpha; β: slope coefficients; : increased; : decreased; : leads to; >: greater than; <: less than; =: equals

CANCER SUPPORT SERVICES SURVEY

49

death or
withdrew

(Waters, Liu,
Schootman, &
Jeffe, 2013)
Worry about
cancer
progression and
low perceived
social support:
implications for
quality of life
among earlystage breast
cancer patients
Country: USA,
MO
Funding:
NCI and BrCA
Stamp Fund
(R01CA102777)
and NCI Cancer
Center
Support Grant
(P30 CA91842)
Bias: n did not
worry

Worry + PSS
affects QOL

Cross- sectional
and
longitudinal
with controls
Purpose: crosssectional and
longitudinal
Interrelationships
among worry
about CA
progression,
PSS, and QOL
in BrCA
Conducted: 4
computerassisted phone
interviews 4–6
weeks (T1),
6 months (T2),
1 year (T3), and
2 years (T4)
following
definitive
surgery.
Recruited: from
MO hospitals

Setting: clinic
n: 480
pop: avg age
58 yr. mainly
white, least
some college
edu, no hx DS
IC: 1st
primary earlystage BrCA
(stages 0–IIA)
b/w 10/2003
to 6/2007,
English
speaking, age
>40,
definitive
surgery
EC: hx other
CAs,
chemotherapy
age > 65,
cognitive
impairment,
need for
additional CA
treatment
Attrition: 12%

IV1: Worry
IV2: PSS
IV3:
demographics
IV4: anxiety

Medical
Outcomes Study
Social Support
Survey 19-item
(α= 0.97)

DV1: QOL

Functional
Assessment of
CA
Therapy-Breast v
4
RAND 36-item
Health Survey
(α=0.77 – 0.92)
State-Trait
Anxiety
Inventory
(α=0.93)

SAS
statistical
software v9.3

70% of n not
worried about
CA progressing

Spearman
rank-order
correlation

worryQOL
(Wilks’ λ=0.94,
F[8,455]04.1,
p<.0001)

Multivariate
analysis of
variance
(MANOVA)
and
multivariate
analysis of
covariance
(MANCOVA)
Post hoc test

PSSQOL
(λ=0.86,
F[24,1,320]02.9,
p<.0001)

Χ2

But not for the
interaction
worry + PSS
(λ=0.94,
F[24,1,320]01.2,
p=0.24).

Paired &
unpaired
Student t test

T1-T3: worry,
 PSS effecting
QOL still seen

LOE= III-2
Strengths-design
showing one time survey
and changes over time,
Weaknesses- very
specific sample, worry
single-item measure,
final interview =
healthier pt
Conclusions-  worry
and/or  PSS =  QOL,
support needs lessen
over time, interaction not
clarified
Application- PSS does
not related to levels of
worry, but both
independently are related
to levels of QOL.
PSS is not stable
individual characteristic

T4 all significant
negative effects
of greater worry
and lower PSS
had dissipated

2 yr study.
AA: African American; avg: average; b/w: between; BL: baseline; BrCA: breast cancer; CA: cancer; CG: caregiver; DS: depressive symptoms; DV: dependent variables; dx:
diagnosed; EC: exclusion criteria; edu: education; f/u: follow up; FL: Florida; FT: full time; HNC: head and neck cancer; HRQoL: health related quality of life; hx: history; IC:
inclusion criteria; ID: identify; IL: Illinois; IV: independent variables; LOE: levels of evidence; MHQOL: mental health quality of life; MI: mental illness; MO: Missouri; n:
sample size; NCI: National Cancer Institute; NJ: New Jersey; NS: non significant; NY: New York; PHQOL: physical health quality of life; pop: population; PSS: perceived
social support; pt: patient; QOL: quality of life; SO: significant other; SS: support services; tx: treatment; UK: United Kingdom; USA: United States of America ; Χ2: Chi square
test; v: version; vs: versus; yr: year; α: Cronbach’s alpha; β: slope coefficients; : increased; : decreased; : leads to; >: greater than; <: less than; =: equals

CANCER SUPPORT SERVICES SURVEY

50

Attrition rate
explanation
not disclosed
Setting:
medical
centers

AA: African American; avg: average; b/w: between; BL: baseline; BrCA: breast cancer; CA: cancer; CG: caregiver; DS: depressive symptoms; DV: dependent variables; dx:
diagnosed; EC: exclusion criteria; edu: education; f/u: follow up; FL: Florida; FT: full time; HNC: head and neck cancer; HRQoL: health related quality of life; hx: history; IC:
inclusion criteria; ID: identify; IL: Illinois; IV: independent variables; LOE: levels of evidence; MHQOL: mental health quality of life; MI: mental illness; MO: Missouri; n:
sample size; NCI: National Cancer Institute; NJ: New Jersey; NS: non significant; NY: New York; PHQOL: physical health quality of life; pop: population; PSS: perceived
social support; pt: patient; QOL: quality of life; SO: significant other; SS: support services; tx: treatment; UK: United Kingdom; USA: United States of America ; Χ2: Chi square
test; v: version; vs: versus; yr: year; α: Cronbach’s alpha; β: slope coefficients; : increased; : decreased; : leads to; >: greater than; <: less than; =: equals

CANCER SUPPORT SERVICES SURVEY

Table 2

1

X

NS n/a

AA


2

X

M
onl n/a NS NS
y

NS

1

X

NS n/a NS n/a

NS

M


NS

-

Literature review

Matthews
(2012)
Zhou (2010)

Applebaum
(2014)
Leow (2014)

2

X

n/a NS NS

NS
n/a

-

NS

-

n/a

Prostate
only

n/a

n/a

n/a

n/a

n/a

NS n/a NS n/a n/a
n/a NS

NS

NS n/a NS NS n/a

n/a

n/a NR n/a n/a

Optimism

n/a n/a n/a n/a

n/a

Dx date/time as a
CG
Religion

n/a

Tx type

n/a

CA stage

n/a n/a n/a n/a

X

n/a

CA type

X

n/a

Depression

NS n/a NS NS n/a

Comorbidities

NS

Age

Married/partnered

NS

Insurance

Employment

NS NS NS NS

Income

Race/ethnicity

Educational Level

X

Occupation

Gender

Paterson
(2013)

1

CG

Study
Brand (2014)

Times the
population was
surveyed
CA pt

Appendix G Synthesis Table: Characteristics related to QOL from social support

n/a

+

n/a

n/a

n/a

NS

+

n/a

NS

n/a

n/a

n/a

NR

NS

Prostate
only

n/a

NS

NR

n/a

NS

n/a

n/a

+

n/a

n/a

n/a

n/a

n/a

NS

n/a

NS

BrCA
only

CA
S
only

Morse (2014)
Pulgar (2015)
Sammarco
(2010)

1

X

1

X

NS n/a

X

F
onl NS
y

1

X

n/a

n/a
+
+

NS

NS
Lati
na


n/a

+

n/a
+

NS

+

-

NS

NS

Social support
conclusion

BF PSS
 QOL
Only PSS; +
due to 
coping
PSS=QOL
PSS predicts
QOL; mediated
by coping
Optimism 
PSS
32% used
friends; 8%
spouse

Positive
correlation
b/w PSS
and QOL

X
X
X
X
X
X

25% used
online SG

Not tested,
assumed

n/a

Vitality  PSS

X

n/a

Latina 
spouse/family
SS

X

n/a

CANCER SUPPORT SERVICES SURVEY
Leung (2014)
3

X

1

X

F
onl n/a NS n/a
y
F
onl n/a +
+
y

Huang (2013)

Salonen
(2014)

2

X

52

NS

n/a

n/a

n/a

NS n/a NS n/a

n/a

+

n/a n/a

NS n/a

-

n/a NS

-

X

NR n/a NR NR

NR

4

X

F
onl n/a NS n/a
y

NS

n/a

Waters (2013)

n/a

-

n/a

n/a

SS was
Spouses

X

PSS  DS; TA
NS

X

n/a

-

BrCA
only

-

NS

NS

n/a

n/a

-

n/a

BrCA
only

n/a

n/a

n/a

n/a

n/a

n/a n/a

HNC
only

-

-

n/a

n/a

-

n/a

n/a

Penedo (2012)
2

n/a

NR n/a

-

NR n/a

-

-

-

BrCA
only

Early
stage
only

85% used
Spouse/partner
s
PSS changes
with time and
tx
Worry  PSS

X

X

X

Correlation found (a)

2

0

5

3

3

5

6

2

4

7

7

3

2

3

7

2

2

13

NS, NR (b)

6

2

8

5

8

2

7

0

8

2

0

3

1

3

4

1

1

0

n/a, other

5

12

1

6

3

7

1

12

2

5

7

8

11

8

3

11

11

1

% of review studies support [a ÷
(a+b)]

25

0

38

38

27

71

46

100

33

77 100

50

66

50

63

66

66

92

Correlation found

0

0

4

3

2

4

4

2

4

5

6

2

2

3

4

1

1

NS, NR

4

1

5

3

6

0

5

0

4

0

0

2

1

3

4

1

1

n/a, other

5

8

0

3

1

5

0

7

1

3

3

5

6

3

1

7

7

% of these studies support

0

0

45

50

25

100

45

100

50

66

50

50

50

50

CA pt only studies

50 100 100

100

AA: African American; avg: average; b/w: between; BL: baseline; BrCA: breast cancer; CA: cancer; CG: caregiver; DS: depressive symptoms; DV: dependent variables; dx:
diagnosed; EC: exclusion criteria; edu: education; f/u: follow up; FL: Florida; FT: full time; HNC: head and neck cancer; HRQoL: health related quality of life; hx: history; IC:
inclusion criteria; ID: identify; IL: Illinois; IV: independent variables; LOE: levels of evidence; MHQOL: mental health quality of life; MI: mental illness; MO: Missouri; n:
sample size; NCI: National Cancer Institute; NJ: New Jersey; NS: non significant; NY: New York; PHQOL: physical health quality of life; pop: population; PSS: perceived
social support; pt: patient; QOL: quality of life; SO: significant other; SS: support services; tx: treatment; UK: United Kingdom; USA: United States of America ; Χ2: Chi square
test; v: version; vs: versus; yr: year; α: Cronbach’s alpha; β: slope coefficients; : increased; : decreased; : leads to; >: greater than; <: less than; =: equals

CANCER SUPPORT SERVICES SURVEY

Appendix E: Figure 2
Wilson and Cleary’s (1995) health-related quality of life conceptual model (Rodriguez, Mayo, & Gagnon, 2013, p. 1791)

CANCER SUPPORT SERVICES SURVEY

Appendix F: Figure 3
Permission needed to reprint.

Used/Reprinted with permission from the University of Iowa Hospitals and Clinics. Copyright 2015. For permission
to use or reproduce the model, please contact the University of Iowa Hospitals and Clinics at (319) 384 -9098.

CANCER SUPPORT SERVICES SURVEY

Appendix G
Demographics
Please select one choice for each question, unless otherwise noted
1. Your age:
 1-18 years of age
 18-24 years of age
 25-39 years of age
 40-55 years of age
 56-69 years of age
 70+ years of age
2. Your gender:
 Male
 Female
 Other (please specify): __________________
3. Relationship status: You are currently...
 Single
 Long term live in partnership
 First marriage
 Remarried following widowhood
 Remarried following dissolution of previous marriage
 Separated
 Divorced
 Widowed
4. Do you live alone?
 Yes
 No






5. What is your Race?
White
Black or African American
Asian
Native American and Alaska Native
Native Hawaiian and other Pacific Islander

6. Ethnicity: Are you Hispanic/ Latino?
 Yes
 No
7. Highest education level completed
 Primary (including no formal education)
Used/Reprinted with permission from the University of Iowa Hospitals and Clinics. Copyright 2015. For permission
to use or reproduce the model, please contact the University of Iowa Hospitals and Clinics at (319) 384 -9098.

EVIDENCE BASED SYSTEM CHANGE PROJECT REPORT

56

 GED
 High school
 Some college
 2 year college
 4 yr university
 Masters/doctorates program
8. Your current work status: (check all that apply
 Retired
 Unemployed
 Working full time
 Part time
 Leave of absence
 Short term disability
 Long term disability
 Student
 Looking after home/family
9. Are you a Veteran?
 Yes
 No
10. Connection to the Community: I _______ diagnosed with cancer
 Am the person
 Have a spouse/partner
 Have a child
 Have a parent
 Have a family member
 Have a friend
 Other: __________________________
If you have not been diagnosed with cancer: skip this section and go to question #17:
11. Month and year you were first diagnosed with cancer: _________/__________

12. Month and year you were diagnosed with reoccurrence: _________/__________
N/A

13. What type of cancer do you have? Example: breast, prostate, small cell
carcinoma, etc.:
______________________________________________________________

EVIDENCE BASED SYSTEM CHANGE PROJECT REPORT

57

14. What is your current cancer stage?
 0: Cancer hasn't spread
 I: Cancer limited to the tissue of origin, evidence of tumor
 II: Limited local spread of cancerous cells
 III: Extensive local and regional spread
 IV Cancer has spread beyond the lymph nodes into other parts of the body
(metastasized)
 Remission (cancer free < 5 years)
 Survivor (cancer free > 5 years)
 Other
 Unknown
15. What cancer treatment type did you have type within the last year: select all that
apply
 Surgery
 Radiation
 Chemotherapy
o Oral
o Intravenous
 Hormone therapy
 Biological therapies
 Bisphosphonates
 Bone marrow
 Stem cell transplants
 Alternative
 Other
 None
16. To what extent do you feel you are in control with your health care?
0 (not at all) – 5 (complete control)
 0 (not at all)
 1
 2
 3
 4
 5 (complete control)

Services

17. Month and year you started coming to the Community: __________ / ____________

EVIDENCE BASED SYSTEM CHANGE PROJECT REPORT

18. How often do you attend programs associated with this organization?
 I have not attended any services within the last year (since January 2015)
 Once year
 Once a month
 Once a week
 _______ days a week
 Everyday
 Other _________________________________________

19. What programs have you attend in the last year? Select all that apply
Support services
Newcomer meeting
Participant support group
Living with loss
Family support group
Learn and Support Group- Diagnosis specific groups
Surviving and thriving
Living with loss
Youth and Family Support- Kid Support, Family Connect, Teen Talk
Education
Educational Talks- one speaker
Educational seminar- multiple speakers
Cancer, genetics, and the family tree
Lunch and learn – held at Banner
Mind, Body Connection Retreat
Healthy lifestyle activities
Gentle yoga
Tai Chi
Fit for life series
Walking club
Qi Gong
Zumba
Jin Shin Jyutsu
Journey to wholeness
Peaceful breath and relaxation
Drumming
Clay class
Panting Class
Cooking for Health/Life
Cooking Demonstrations- Discover Healing Power of Food

58

EVIDENCE BASED SYSTEM CHANGE PROJECT REPORT

59

Social connections
Bunco
Social Outings
Walking Club
Knitting
Teen Social Activities
Book club
Potluck
Community Social Events – Family Day of Hope, Red Balloon, Tribute Tree
Other (please explain): _____________________________________________

20. Referring to previous Question# 19, how often do you attend these programs?
Select one for each program type

Rarely

Less than
once a
month

One or two
times a
month

About
once a
week

Two or
three
times a
week

Most days

0

1

2

3

4

5

6

Education

0

1

2

3

4

5

6

Healthy Lifestyle Activities

0

1

2

3

4

5

6

Social Connections

0

1

2

3

4

5

6

Program type

Never
/Other

Support Services

CANCER SUPPORT SERVICES SURVEY

Appendix H

CANCER SUPPORT SERVICES SURVEY

Appendix I

CANCER SUPPORT SERVICES SURVEY

Appendix J

EVIDENCE BASED SYSTEM CHANGE PROJECT REPORT

63

CANCER SUPPORT SERVICES SURVEY

Appendix K
Table 3
Participant Demographics
Characteristics
Respondent
Person with cancer
Supporter
Age Group (years)
18-24
25-39
40-55
56-69
70+
Sex
Male
Female
Race
White
African American
Asian
Hispanic
Employment
Retired
Working full time
Part time
Long term disability
Other (Unemployed, student,
homemaker)
Self employed
Marital status
Single
Long term live in partnership
First marriage
Remarried
Divorced
Widowed
Veteran
Education
High School or less
Some college
2 yr college
4 yr college

n

(%)

41
6

(87.2)
(12.8)

0
3
11
23
11

0
(6.3)
(22.9)
(47.9)
(22.9)

11
36

(23.4)
(76.6)

43
1
2
5*

(93.5)
(2.2)
(4.3)
(10.6)*

21
8
6
5
5

(43.8)
(16.7)
(12.5)
(10.4)
(10.4)

3

(6.3)

7
3
18
9
9
2
8

(14.6)
(6.3)
(37.5)
(18.8)
(18.8)
(4.2)
(16.7)

2
11
8
11

(4.2)
(22.9)
(16.7)
(22.9)

EVIDENCE BASED SYSTEM CHANGE PROJECT REPORT
Masters/Doctorate

16

65
(33.3)

Note. Using chi-squared analysis, we compared the sample to the previous local and national survey demographics
* p < .05

Table 4
Characteristics of persons with cancer (n=41)
Cancer type
Female organs only (including BRCA)
Blood CAs
Gut CAs
Lung CAs
Male organs only
Other (skin, vocal, endocrine)
Declined to answer

n

(%)

14
8
4
4
3
3
6

(29.2)
(16.7)
(8.3)
(8.3)
(6.3)
(6.3)

Cancer stage
0-II: limited local spread
7
III: regional spread
6
IV: metastasized
6
Remission
11
Survivor
6
Reoccurrence
17
Second cancer
6
Note. Using chi-squared analysis, we compared the sample to the previous
survey demographics
* p < .05
Table 5
Instrument Mean (SD) Scores
Instrument
QOL
MSPSS significant other
MSPSS family
MSPSS friends
MSPSS overall

Mean
83.7
5.4
5.1
5.3
5.2

(17.9)
(15.4)
(15.4)
(28.2)
(15.4)
(35.4)
(12.5)
local and national

(SD)
(12.1)
(1.7)
(1.6)
(1.3)
(1.4)

Table 6
Summary of correlations, Means and Standard Deviations for Scores on the QOL, MSPSS, and
MSPSS subscales
Measures
Mean
SD
1

EVIDENCE BASED SYSTEM CHANGE PROJECT REPORT
1. QOL
2. MSPSS overall
3. MSPSS significant other
4. MSPSS family
5. MSPSS friend

83.7
5.4
5.1
5.3
5.2

66
12.1
1.7
1.6
1.3
1.4

---.458**
.427**
.360*
.435**

*p<.05, **p< .01, ***p<.001

Table 7
Correlations between instruments and number of different program used and frequency of attendance
(n=41)
All
programs
Measures

#

Support
#

Freq.

Healthy
activities

Educational
#

Freq.

#

Social events

Freq.

#

Freq.
.002

QOL

.032

.159 .116

-.083 -.022

-.018 .127

-.131

MSPSS overall

.057

.117 .109

.020 -.136

-.065 .125

-.139 -.102

MSPSS significant other

.076

.103 .139

.050 -.137

-.012 .120

-.129 -.185

MSPSS family

.028

.019 -.007

.076 -.056

-.127 .123

-.022

MSPSS friend

.057

.117 .109

.020 -.136

-.064 .125

-.139 -.102

.037

Note. Alpha set at < .05. All were found to be non-significant
Table 8
Correlations between perceived Health Control and program numbers, frequencies, and instruments
Instruments

Coefficient

n

p

MSPSS SO

.286

44

.060

MSPSS Family

.302*

44

.047*

MSPSS Friend

.305*

45

.042*

MSPSS Overall

.314*

44

.038*

QOL

.095

44

.539

Attend # support programs

.055

46

.717

Attend # healthy activities

.393**

46

.007**

Total # different programs

.326

46

.027

Frequency of healthy activities

.309*

46

.037*

Note. *p< .05, **p< .01. MSPSS = multidimensional scale perceived social support; SO =
significant other; QOL= Quality of life score; # = number of different programs

CANCER SUPPORT SERVICES SURVEY

Statistics Continued.

Table 9
Participant Reported Program Type attendance frequency within 2015
Reported Frequencies n (%)

Average Number of Agency programs

1-2 times
a month

About
once a
week

2-3 times a
week

Days
program
avail. Per
month

Individual
programs

Program sessions
per month

Never

Rarely

Less than
once a
month

Support Services

19 (40)

11 (23)

5 (10)

4 (8)

8 (17)

1 (2)

20

7

31

Education

16 (33)

17 (35)

13 (27)

13 (27)

1 (2)*

1(2)*

3

5

3

Health Activities

27 (56)

7 (15)

3 (6)

5 (10)

5 (10)

1 (2)

16

14

36

Social Events

22 (46)

11 (23)

9 (19)

4 (8)

1 (2)

1 (2)*

5

7

5

Program types

* Not possible to attend the program types at the frequencies reported due to limited program availability; concluding partic ipant memory of program attendance
was unreliable.

CANCER SUPPORT SERVICES SURVEY

Appendix L
Budget
Table 10
Budget outline: compared original cost to real expenses of this project
Item
Original cost
Cost for this project

Reason

$300/year

$0/year

Free membership for non-profits and
educational institutes

$0

$0

Public domain scales

$45 through Vistaprint

$ 80

Time restrictions and last minute
changes did not allow for online
orders

$35 through Amazon

$35

IBM SPSS Statistics
Professional v23

$5,240/year

$0/year

Total

$542/month

SurveyMoz premium plan

Instrument use
Printing
Recruitment flyers
Print paper surveys
Locked ballot box

Total for length of this project
(4 months)

$1892

Grand student access, Licensed
through ASU

$115

$115

Non-profit organization and doctorate
of nursing practice student