Accepted Manuscript How Do Follow-Up Care Instructions and Treatment Summaries Relate to Cancer Survivors’ Cancer-Related Pain? Jennifer M. Jabson, PhD, MPH Deborah J. Bowen, PhD PII:
S0885-3924(14)00215-2
DOI:
10.1016/j.jpainsymman.2014.03.004
Reference:
JPS 8648
To appear in:
Journal of Pain and Symptom Management
Received Date: 14 November 2013 Revised Date:
25 February 2014
Accepted Date: 2 April 2014
Please cite this article as: Jabson JM, Bowen DJ, How Do Follow-Up Care Instructions and Treatment Summaries Relate to Cancer Survivors’ Cancer-Related Pain?, Journal of Pain and Symptom Management (2014), doi: 10.1016/j.jpainsymman.2014.03.004. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
ACCEPTED MANUSCRIPT
Brief Report
13-00639R1
How Do Follow-Up Care Instructions and Treatment Summaries Relate to Cancer
RI PT
Survivors’ Cancer-Related Pain?
SC
Jennifer M. Jabson PhD, MPH, and Deborah J. Bowen PhD
University of Tennessee (J.M.J.), Knoxville, Tennessee, and University of Washington School of
Address correspondence to: Jennifer M. Jabson, PhD, MPH
University of Tennessee
TE D
Department of Public Health
M AN U
Medicine (D.J.B.), Seattle, Washington, USA
367 HPER 1914 Andy Holt Ave.
EP
Knoxville, TN 37996, USA
AC C
E-mail: [email protected]
1
ACCEPTED MANUSCRIPT
Abstract Context: Cancer-related pain is a problem for many cancer survivors. Treatment summaries (TS) and follow-up care instructions (FCI) provided after cancer treatment could
RI PT
reduce pain for cancer survivors.
Objectives: This study sought to determine how TS and FCI received by cancer survivors, relate to cancer survivors’ cancer-related pain after treatment completion.
SC
Methods: Data were from 2010, Behavioral Risk Factor Surveillance System, Cancer Survivorship module, completed by ten U.S. states and entities.
M AN U
Results: Pain was reported by 9% of survivors. TS (p = .02) and FCI (p < .001) were associated with pain. Compared to cancer survivors who had not received TS or FCI, those who received TS had greater odds of pain (OR 1.57, 95% CI 1.08, 2.28), and those who received FCI had more than twice the odds of pain (OR 2.36 95% CI 1.52, 3.67).
TE D
Conclusion: FCI and TS related to pain, but in the opposite direction than predicted. Those who received TS and FCI were more likely to report pain than those who did not receive FCI and TS. This may be explained by the severity of cancer treatment. It is possible that those
EP
who undergo more severe cancer treatments are more likely to receive FCI and TS. Testing this relationship is a logical next step.
AC C
Key Words: cancer-related pain, survivorship care plans, follow-up instructions, treatment summaries, cancer survivorship Running head: Survivorship Care Plans and Cancer Survivor Pain Accepted for publication: April 2, 2014.
2
ACCEPTED MANUSCRIPT
Introduction In 2012, nearly 13 million cancer survivors were living in the United States [1]. Cancer survivors, defined as individuals who have received a cancer diagnosis and remained alive after
RI PT
cancer treatment was completed [2], represent a growing population. As the size of this
population grows, we are learning important information regarding the many cancer-related issues that face cancer survivors. The National Action Plan for Survivorship [3] and the Institute
SC
of Medicine report [4], “From Cancer Patient to Cancer Survivor: Lost in Transition,” have identified cancer-related pain as an important outcome for survivors’ quality of life after cancer.
M AN U
Cancer-related pain, the physical pain caused by cancer (e.g., metastatic bone pain) and/or its treatment (e.g., chemotherapy-induced peripheral neuropathy), is an important cancer-related health outcome for many cancer survivors [5, 6]. Current evidence indicates that approximately 10% of cancer survivors experience cancer-related pain [6]. For many, cancer-related pain is a
TE D
late/long-term effect of cancer or its treatment that can manifest at any point after treatment is completed.
The size of the cancer survivor population and the need for effective programs that can
EP
reach survivors call for public health strategies [3, 7]. Survivorship care plans (SCPs) may be one strategy that could reduce pain experienced by cancer survivors. The Institute of Medicine
AC C
[4], and the President’s Cancer Panel [8], recommended that every cancer survivor, and his/her primary health care provider, receive a SCP after the survivor completes cancer treatment. At their most fundamental level, SCPs include comprehensive treatment summaries (TS) of cancer treatments received, and follow-up care instructions (FCI) for when and where to schedule follow-up appointments [4] . TS and FCI also may include information regarding the likelihood for developing late/long-term effects caused by cancer and its treatment, including cancer-related pain [9]. 3
ACCEPTED MANUSCRIPT
Recently published findings have suggested that TS and FCI are beneficial to some survivors’ cancer-specific, health-related needs [10]. However, currently we lack published evidence that specifically informs the relationship between TS and FCI and cancer-related pain.
RI PT
There are several possible ways that TS and FCI could influence survivors’ cancer-related pain. TS supply survivors with documentation regarding their cancer type and stage, as well as a comprehensive summary of cancer treatments received. Receiving TS could support survivors’
SC
awareness about the risk for developing cancer-related pain during the survivorship period based on their treatment. FCI provide specific instructions for follow-up care, including which
M AN U
provider to contact for specific needs and when to schedule follow-up care. FCI could inform survivors about with whom to communicate about pain symptoms should they arise. For example, if a survivor perceives physiological changes that could indicate cancer recurrence or metastasis, or if the survivor perceives late effects, or pain caused by cancer treatment, FCI and
TE D
TS may heighten awareness about the need for care, guide the survivor to the best provider for care, and reduce pain through receipt of needed care. It also is thought that survivors’ pain could be reduced if TS and FCI were provided to cancer survivors’ primary care providers. TS
EP
and FCI may reduce pain experienced by survivors by informing primary care providers’ about the cancer survivors’ risk for developing cancer-related pain and the necessary treatment for
AC C
pain. TS and FCI also may reduce pain by improving communication about cancer-related pain between providers and survivors. Not all cancer survivors receive TS and FCI. Recent publications indicate that 31% of cancer survivors received TS and 58-71% received FCI [10, 11]. The likelihood of receiving FCI and TS is not equally distributed among cancer survivors, and the odds of receiving FCI and TS seem to be lowest for cancer survivors who are elderly, and those without a college education
4
ACCEPTED MANUSCRIPT
[11]. It is possible that age and education may modify associations between survivors’ receipt of FCI, TS and cancer-related pain. The purpose of this study was to determine how TS and FCI related to cancer survivors’
RI PT
cancer-related pain. We hypothesized that cancer survivors who received a TS and FCI would report less cancer-related pain than those who did not report receipt of TS and FCI. We also tested the hypothesis that age and education would moderate the associations between TS, FCI
SC
and cancer-related pain. Methods
M AN U
The Behavioral Risk Factor Surveillance System (BRFSS) is an ongoing, probabilitybased, cross-sectional, health surveillance program sponsored collaboratively by the Center for Disease Control and Prevention and U.S. entities and administered to noninstitutionalized adults older than 18 years of age. Data were from 8941 adult cancer survivors participating in the 2010
TE D
optional cancer survivorship module administered in ten states and entities including Alaska, Connecticut, Guam, Indiana, Massachusetts, Missouri, New Mexico, Ohio, South Dakota, and Wisconsin [12]. From the full sample of survivors, 11% (n = 1022) indicated active cancer
EP
treatment (e.g., chemotherapy, radiation, or surgery) at the time of data collection and were excluded from this study. The resulting sample size included 7919 cancer survivors.
AC C
Measures
Cancer survivors answered “yes” to a single question: “Have you ever been told by a doctor, nurse, or other health professional that you had cancer?” Cancer-related pain was determined from a single question: “Do you currently have physical pain caused by your cancer or cancer treatment?”(yes/no). Receipt of TS and FCI was determined from two questions, “Did any doctor, nurse, or other health professional ever give you a written summary of all the cancer
5
ACCEPTED MANUSCRIPT
treatments that you received?”(yes/no) and “Have you EVER received instructions from a doctor, nurse, or other health professional about where you should return or who you should see for routine cancer check-ups after completing treatment for cancer?”(yes/no). Cancer-related
RI PT
characteristics included a single question about type of cancer diagnosed. Demographic characteristics included race/ethnicity, gender, age, income, and education. Statistical Analysis
SC
Descriptive summary statistics were calculated for cancer survivor’s cancer-related and demographic characteristics. Chi-square statistics were calculated to describe the associations
M AN U
between receipt of TS, FCI and cancer-related pain. Multivariable logistic regression models were calculated with adjustment to test associations between TS, FCI and pain. Multivariable logistic regression models also were calculated to test age and education as moderators of associations between receipt of TS, FCI and pain [13]. All analyses were weighted to account
TE D
for the complex sampling design [14]. Analyses were conducted using SAS 9.3 [15]. Results
More women (59%) than men (41%) comprised the sample (Table 1). The majority of
EP
cancer survivors in this sample were white (90%), 4% identified as black, and 3% as Hispanic. The largest percentage of cancer survivors (36%) reported graduating from college, and 8% of
AC C
survivors reported having less than a high school education. Cancer-Related Pain
Cancer-related pain was reported by 9% of the sample. In the unadjusted analyses, FCI (P
S0885-3924(14)00215-2
DOI:
10.1016/j.jpainsymman.2014.03.004
Reference:
JPS 8648
To appear in:
Journal of Pain and Symptom Management
Received Date: 14 November 2013 Revised Date:
25 February 2014
Accepted Date: 2 April 2014
Please cite this article as: Jabson JM, Bowen DJ, How Do Follow-Up Care Instructions and Treatment Summaries Relate to Cancer Survivors’ Cancer-Related Pain?, Journal of Pain and Symptom Management (2014), doi: 10.1016/j.jpainsymman.2014.03.004. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
ACCEPTED MANUSCRIPT
Brief Report
13-00639R1
How Do Follow-Up Care Instructions and Treatment Summaries Relate to Cancer
RI PT
Survivors’ Cancer-Related Pain?
SC
Jennifer M. Jabson PhD, MPH, and Deborah J. Bowen PhD
University of Tennessee (J.M.J.), Knoxville, Tennessee, and University of Washington School of
Address correspondence to: Jennifer M. Jabson, PhD, MPH
University of Tennessee
TE D
Department of Public Health
M AN U
Medicine (D.J.B.), Seattle, Washington, USA
367 HPER 1914 Andy Holt Ave.
EP
Knoxville, TN 37996, USA
AC C
E-mail: [email protected]
1
ACCEPTED MANUSCRIPT
Abstract Context: Cancer-related pain is a problem for many cancer survivors. Treatment summaries (TS) and follow-up care instructions (FCI) provided after cancer treatment could
RI PT
reduce pain for cancer survivors.
Objectives: This study sought to determine how TS and FCI received by cancer survivors, relate to cancer survivors’ cancer-related pain after treatment completion.
SC
Methods: Data were from 2010, Behavioral Risk Factor Surveillance System, Cancer Survivorship module, completed by ten U.S. states and entities.
M AN U
Results: Pain was reported by 9% of survivors. TS (p = .02) and FCI (p < .001) were associated with pain. Compared to cancer survivors who had not received TS or FCI, those who received TS had greater odds of pain (OR 1.57, 95% CI 1.08, 2.28), and those who received FCI had more than twice the odds of pain (OR 2.36 95% CI 1.52, 3.67).
TE D
Conclusion: FCI and TS related to pain, but in the opposite direction than predicted. Those who received TS and FCI were more likely to report pain than those who did not receive FCI and TS. This may be explained by the severity of cancer treatment. It is possible that those
EP
who undergo more severe cancer treatments are more likely to receive FCI and TS. Testing this relationship is a logical next step.
AC C
Key Words: cancer-related pain, survivorship care plans, follow-up instructions, treatment summaries, cancer survivorship Running head: Survivorship Care Plans and Cancer Survivor Pain Accepted for publication: April 2, 2014.
2
ACCEPTED MANUSCRIPT
Introduction In 2012, nearly 13 million cancer survivors were living in the United States [1]. Cancer survivors, defined as individuals who have received a cancer diagnosis and remained alive after
RI PT
cancer treatment was completed [2], represent a growing population. As the size of this
population grows, we are learning important information regarding the many cancer-related issues that face cancer survivors. The National Action Plan for Survivorship [3] and the Institute
SC
of Medicine report [4], “From Cancer Patient to Cancer Survivor: Lost in Transition,” have identified cancer-related pain as an important outcome for survivors’ quality of life after cancer.
M AN U
Cancer-related pain, the physical pain caused by cancer (e.g., metastatic bone pain) and/or its treatment (e.g., chemotherapy-induced peripheral neuropathy), is an important cancer-related health outcome for many cancer survivors [5, 6]. Current evidence indicates that approximately 10% of cancer survivors experience cancer-related pain [6]. For many, cancer-related pain is a
TE D
late/long-term effect of cancer or its treatment that can manifest at any point after treatment is completed.
The size of the cancer survivor population and the need for effective programs that can
EP
reach survivors call for public health strategies [3, 7]. Survivorship care plans (SCPs) may be one strategy that could reduce pain experienced by cancer survivors. The Institute of Medicine
AC C
[4], and the President’s Cancer Panel [8], recommended that every cancer survivor, and his/her primary health care provider, receive a SCP after the survivor completes cancer treatment. At their most fundamental level, SCPs include comprehensive treatment summaries (TS) of cancer treatments received, and follow-up care instructions (FCI) for when and where to schedule follow-up appointments [4] . TS and FCI also may include information regarding the likelihood for developing late/long-term effects caused by cancer and its treatment, including cancer-related pain [9]. 3
ACCEPTED MANUSCRIPT
Recently published findings have suggested that TS and FCI are beneficial to some survivors’ cancer-specific, health-related needs [10]. However, currently we lack published evidence that specifically informs the relationship between TS and FCI and cancer-related pain.
RI PT
There are several possible ways that TS and FCI could influence survivors’ cancer-related pain. TS supply survivors with documentation regarding their cancer type and stage, as well as a comprehensive summary of cancer treatments received. Receiving TS could support survivors’
SC
awareness about the risk for developing cancer-related pain during the survivorship period based on their treatment. FCI provide specific instructions for follow-up care, including which
M AN U
provider to contact for specific needs and when to schedule follow-up care. FCI could inform survivors about with whom to communicate about pain symptoms should they arise. For example, if a survivor perceives physiological changes that could indicate cancer recurrence or metastasis, or if the survivor perceives late effects, or pain caused by cancer treatment, FCI and
TE D
TS may heighten awareness about the need for care, guide the survivor to the best provider for care, and reduce pain through receipt of needed care. It also is thought that survivors’ pain could be reduced if TS and FCI were provided to cancer survivors’ primary care providers. TS
EP
and FCI may reduce pain experienced by survivors by informing primary care providers’ about the cancer survivors’ risk for developing cancer-related pain and the necessary treatment for
AC C
pain. TS and FCI also may reduce pain by improving communication about cancer-related pain between providers and survivors. Not all cancer survivors receive TS and FCI. Recent publications indicate that 31% of cancer survivors received TS and 58-71% received FCI [10, 11]. The likelihood of receiving FCI and TS is not equally distributed among cancer survivors, and the odds of receiving FCI and TS seem to be lowest for cancer survivors who are elderly, and those without a college education
4
ACCEPTED MANUSCRIPT
[11]. It is possible that age and education may modify associations between survivors’ receipt of FCI, TS and cancer-related pain. The purpose of this study was to determine how TS and FCI related to cancer survivors’
RI PT
cancer-related pain. We hypothesized that cancer survivors who received a TS and FCI would report less cancer-related pain than those who did not report receipt of TS and FCI. We also tested the hypothesis that age and education would moderate the associations between TS, FCI
SC
and cancer-related pain. Methods
M AN U
The Behavioral Risk Factor Surveillance System (BRFSS) is an ongoing, probabilitybased, cross-sectional, health surveillance program sponsored collaboratively by the Center for Disease Control and Prevention and U.S. entities and administered to noninstitutionalized adults older than 18 years of age. Data were from 8941 adult cancer survivors participating in the 2010
TE D
optional cancer survivorship module administered in ten states and entities including Alaska, Connecticut, Guam, Indiana, Massachusetts, Missouri, New Mexico, Ohio, South Dakota, and Wisconsin [12]. From the full sample of survivors, 11% (n = 1022) indicated active cancer
EP
treatment (e.g., chemotherapy, radiation, or surgery) at the time of data collection and were excluded from this study. The resulting sample size included 7919 cancer survivors.
AC C
Measures
Cancer survivors answered “yes” to a single question: “Have you ever been told by a doctor, nurse, or other health professional that you had cancer?” Cancer-related pain was determined from a single question: “Do you currently have physical pain caused by your cancer or cancer treatment?”(yes/no). Receipt of TS and FCI was determined from two questions, “Did any doctor, nurse, or other health professional ever give you a written summary of all the cancer
5
ACCEPTED MANUSCRIPT
treatments that you received?”(yes/no) and “Have you EVER received instructions from a doctor, nurse, or other health professional about where you should return or who you should see for routine cancer check-ups after completing treatment for cancer?”(yes/no). Cancer-related
RI PT
characteristics included a single question about type of cancer diagnosed. Demographic characteristics included race/ethnicity, gender, age, income, and education. Statistical Analysis
SC
Descriptive summary statistics were calculated for cancer survivor’s cancer-related and demographic characteristics. Chi-square statistics were calculated to describe the associations
M AN U
between receipt of TS, FCI and cancer-related pain. Multivariable logistic regression models were calculated with adjustment to test associations between TS, FCI and pain. Multivariable logistic regression models also were calculated to test age and education as moderators of associations between receipt of TS, FCI and pain [13]. All analyses were weighted to account
TE D
for the complex sampling design [14]. Analyses were conducted using SAS 9.3 [15]. Results
More women (59%) than men (41%) comprised the sample (Table 1). The majority of
EP
cancer survivors in this sample were white (90%), 4% identified as black, and 3% as Hispanic. The largest percentage of cancer survivors (36%) reported graduating from college, and 8% of
AC C
survivors reported having less than a high school education. Cancer-Related Pain
Cancer-related pain was reported by 9% of the sample. In the unadjusted analyses, FCI (P
