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Survivorship care plans (SCPs) are intended to facilitate communication and coordination between patients, oncologists, and primary care providers. Most SCP initiatives have focused on oncology providers initiating the SCP process, but time and resource barriers have limited uptake.
This trial compares the feasibility and value of 2 Web-based SCP tools: provider-initiated versus patient-initiated.
This mixed-methods study recruited clinicians from 2 academically-affiliated community oncology practices. Eligible patients were treated by a participating oncologist, had nonmetastatic cancer, completed acute treatment ≤ 2 months before enrollment, and had no evidence of disease. Patients were randomized 1:1 to either provider-initiated or patient-initiated SCPs—both are Web-based tools. We conducted qualitative interviews with providers at baseline and follow-up and with patients 2 months after enrollment. In addition, patients were administered the Preparing for Life as a (New) Survivor (PLANS) and Cancer Survivors’ Unmet Needs (CaSUN) surveys at baseline and 2 months.
A total of 40 providers were approached for the study, of whom 13 (33%) enrolled. Providers or clinic staff required researcher assistance to identify eligible patients; 41 patients were randomized, of whom 25 completed follow-up (61%; 13 provider-initiated, 12 patient-initiated). Of the 25, 11 (44%) had initiated the SCP; 5 (20%) provided the SCP to their primary care provider. On the Preparing for Life as a (New) Survivor and Cancer Survivors’ Unmet Needs, patients in both arms tended to report high knowledge and confidence and few unmet needs. In qualitative interviews, providers and patients discussed SCPs’ value.
Regardless of patient- versus provider-initiated templates and the Web-based design of these tools, barriers to survivorship care planning persist. Further efforts should emphasize workflow
ClinicalTrials.gov NCT02405819; https://clinicaltrials.gov/ct2/show/NCT02405819 (Archived by WebCite at http://www.webcitation.org/6jWqcWOvK)
The completion of active cancer treatment is a critical juncture when patients need support and communication to ensure optimal health and quality of life outcomes. The 2005 Institute of Medicine (IOM) report “
Based on the IOM recommendation, various organizations have developed SCP templates. Most of these templates have been designed with the intention of oncology providers initiating the survivorship care planning process. Uptake of survivorship care planning has, however, been slow and limited [
In this study (ClinicalTrials.gov NCT02405819), we sought to compare the feasibility and value of the 2 Journey Forward models of SCP provision. We designed the study to provide initial evidence of the feasibility and possible value of 2 models of SCP provision. We present data from the perspectives of both patients and providers regarding implementation processes and feasibility, facilitators and barriers, and perceived value of the survivorship care planning process.
This mixed-methods study comparing 2 modalities of SCPs (“Care Plan Builder” and “My Care Plan”) used a randomized design and was conducted in 2 community-based, academically affiliated hospitals [
Participation of clinicians in the study was determined to be an indicator of feasibility, and we tracked the number of clinicians approached, the number eligible, and the number who consented to participate. Clinicians were approached to participate in the study through both in-person presentations of the work and through emailed requests. Consent to participate was acquired in-person. Once clinicians agreed to participate and provided written informed consent, we conducted a baseline qualitative interview in which we asked about experiences of survivorship care planning, expectations for the study, and the perceived value of SCPs. Once data collection with patients was complete, we conducted a follow-up interview with participating clinicians to ask about experiences with the interventions. In this interview, we revisited the issue of the perceived value of SCPs and obtained clinician feedback on the implementation (including barriers and facilitators) and feasibility of the 2 survivorship care planning approaches implemented in this trial.
To determine the feasibility of oncologists or oncology staff identifying patients for an SCP, the original study protocol called for participating oncologists to refer adult patients completing active treatment for nonmetastatic cancer to the study team. Specific patient eligibility criteria included having nonmetastatic disease, completed acute treatment within the past 2 months, and no evidence of disease. Although patients had to have completed acute treatment, patients on chronic treatment (>1 year) were eligible. Patient participants were identified in the clinic by clinic staff, and a member of the research team oversaw consent procedures. Eligible patients who agreed to participate provided written informed consent and were randomized 1:1 using a random number generator with the condition concealed until randomization; patients and their clinicians were then informed of the randomized condition. Patients were paid $35 for their participation in the study.
For participants randomized to the patient-initiated My Care Plan group, the research team directed patients to the Web address for the appropriate tool and provided an instructional hand-out for reference. For participants randomized to the provider-initiated Survivorship Care Plan Builder, the provider was made aware of their randomization and was responsible for completing the SCP. The clinicians were all given information on the SCP Builder website or tool and were also familiarized with the patient-initiated My Care Plan tool.
Data collection occurred at 2 time points: baseline and 2-month follow-up. The primary outcome was receipt of an SCP by the 2-month follow-up. Specifically, at the 2-month follow-up contact, we determined whether the patient had a partially or fully completed SCP versus no plan at all.
Secondary outcomes included supportive care needs assessed by the Cancer Survivors’ Unmet Needs (CaSUN) survey [
Finally, we conducted a brief, targeted qualitative interview with patients at follow-up regarding perceived impact of cancer, informational and support needs, as well as experiences and attitudes about the SCP tool to which they were randomized. This interview collected information on processes undertaken to complete the SCP (or challenges that prevented successful completion of an SCP), parts of the process the patients found helpful or that presented obstacles, and recommendations for improving the process.
Quantitative data from the CaSUN and PLANS were analyzed with summary statistics and descriptively by comparing the distribution of scores at baseline between intervention arms and the distribution of scores at follow-up between intervention arms using nonparametric Wilcoxon rank-sum tests. Changes from baseline to follow-up were described within interventions arms with Wilcoxon signed-rank tests. To describe the differential change from baseline to follow-up between intervention arms (ie, interaction), we compared the changes between intervention arms with Wilcoxon rank-sum tests. No formal sample size calculations were conducted for the secondary quantitative outcome measures; however, the results here can inform power calculations for future evaluations. Analysis of interview data from clinicians and patients was thematic and summative, with a focus on identification of perceived and experienced value of SCPs, as well as facilitators and barriers to implementation of both modalities. Interview data were read and reviewed by various members of the research team, with a view to establishing consensus about major emergent themes. All quantitative analyses were completed using statistical software R, version 3.3.0 [
Of the 40 eligible oncologists at the 2 hospitals, 13 (33%) agreed to participate in the study. Nearly half of the clinicians were female (46%); the sample included 5 radiation oncologists (38%), 5 medical oncologists (38%), and 3 surgeons (23%). The clinicians who did not choose to participate included 17 surgical oncologists and 10 medical oncologists; all eligible radiation oncologists chose to participate in the study. At the initiation of the study, none of the participating oncologists provided SCPs to patients as part of standard care. We conducted follow-up interviews with 11 of the 13 enrolled clinicians; 2 clinicians did not respond to numerous attempts to schedule an interview at follow-up.
Although the planned approach for patient recruitment was for oncologists and clinic staff to identify patients completing treatment, it became clear after 1 month of passive research observation that processes relying on the clinical teams were ineffective. For the remaining 3 months of recruitment, research staff worked with clinic staff to identify patients eligible for SCPs. A member of research staff was present on clinic days and reviewed schedules to identify potentially eligible patients who were due to have appointments. Research staff prompted clinic staff to discuss joining the study with potential participants.
In total, 74 patients were approached and 41 (55%) enrolled and were randomized—21 to the provider-initiated Survivorship Care Plan Builder and 20 to the patient-initiated My Care Plan (
Patient characteristics overall and by study arm.a
Characteristic | All patients (N=41) | Provider-initiated (n=21) | Patient-initiated (n=20) | |
Age | ||||
Mean (Standard deviation) | 66 (11.7) | 66 (12.5) | 65 (11.1) | |
Median (Range) | 63 (44-90) | 64 (44-90) | 62 (44-88) | |
Gender, n (%) | ||||
Male | 13 (31.7) | 6 (28.6) | 7 (35.0) | |
Race, n (%) | ||||
White | 33 (80.5) | 16 (76.2) | 17 (85.0) | |
Black or African American | 5 (12.2) | 4 (19.0) | 1 (5.0) | |
Other | 3 (7.3) | 1 (4.7) | 2 (10.0) | |
Hispanic | 5 (12.2) | 2 (9.5) | 3 (15.0) | |
Education, n (%) | ||||
High school graduate or lower | 7 (17.1) | 4 (19.0) | 3 (15.0) | |
Attended some college | 3 (7.3) | 2 (9.5) | 1 (5.0) | |
College graduate | 8 (19.5) | 3 (14.3) | 5 (25.0) | |
Any postsecondary work | 23 (56.1) | 12 (57.1) | 11 (55.0) | |
Cancer type, n (%) | ||||
Breast | 25 (60.9) | 14 (66.7) | 11 (55.0) | |
Prostate | 8 (19.5) | 4 (19.0) | 4 (20.0) | |
Lung | 4 (9.8) | 1 (4.8) | 3 (15.0) | |
Other | 4 (9.8) | 2 (9.5) | 2 (10.0) | |
Marital Status, n (%) | ||||
Married | 24 (58.5) | 13 (61.9) | 11 (55.0) | |
Divorced or separated | 4 (9.8) | 2 (9.5) | 2 (10.0) | |
Widowed | 6 (14.6) | 1 (4.8) | 5 (25.0) | |
Never married | 7 (17.1) | 5 (23.8) | 2 (10.0) | |
Employment status, n (%) | ||||
Working full-time | 15 (36.6) | 10 (47.6) | 5 (25.0) | |
Retired | 19 (46.3) | 10 (47.6) | 9 (45.0) | |
Other | 7 (17.1) | 1 (4.8) | 6 (30.0) | |
Current health, n (%) | ||||
Excellent | 6 (14.6) | 5 (23.8) | 1 (5.0) | |
Very good | 15 (36.6) | 6 (28.6) | 9 (45.0) | |
Good | 13 (31.7) | 6 (28.6) | 7 (35.0) | |
Fair | 5 (12.2) | 4 (19.0) | 1 (5.0) | |
Poor | 1 (2.4) | 0 (0) | 1 (5) | |
No response | 1 (2.4) | 0 | 1 | |
Computer access, n (%) | ||||
Dial-up or low speed | 1 (2.4) | 1 (4.7) | 0 (0) | |
High speed | 39 (95.1) | 19 (90.5) | 20 (100.0) | |
No response | 1 (2.4) | 1 (4.8) | 0 (0) | |
Computer use, n (%) | ||||
Regular | 35 (85.4) | 18 (85.7) | 17 (85.0) | |
Occasional | 3 (7.3) | 2 (9.5) | 1 (5.0) | |
Rare | 1 (2.4) | 0 (0) | 1 (5.0) | |
Never | 1 (2.4) | 0 (0) | 1 (5.0) | |
No response | 1 (2.4) | 1 (4.8) | 0 | |
Referring clinician type | ||||
Radiation oncology | 32 (78.0) | 17 (80.9) | 15 (75.0) | |
Medical oncology | 8 (19.5) | 3 (14.3) | 5 (25.0) | |
Surgical oncology | 1 (4.9) | 1 (4.8) | 0 |
aNote: individual values are rounded and may not total 100%.
Enrollment into survivorship care planning trial.
After 2 months, 25 (61%) of the 41 enrolled patients provided follow-up data. We made repeated attempts to contact enrolled participants, except where early contacts resulted in expressed desire for no further participation. Reasons given for not participating in follow-up included ill health and change of residence.
Of the 25 patients who participated in follow-up (13 in the provider-initiated arm, 12 in the patient-initiated arm), 11 (44%) had initiated an SCP. In the patient-initiated arm (n=20), 8 initiated a plan, with 5 of these completing the plan and 3 of these 5 reporting that they had given the plan to their primary care provider (PCP). In the provider-initiated arm (n=21), we were not able to assess the number of plans started but not completed or provided to the patient; 3 patients had received a completed SCP by the 2-month follow-up, and 2 of these patients reported having provided the SCP to their PCP.
In the baseline qualitative interviews, clinicians noted the
At baseline, clinicians noted a variety of
At baseline, the primary
Results from the CaSUN needs assessment at baseline indicated few unmet needs (average > 2.0) in either intervention arm (
Cancer Survivors’ Unmet Needs at baseline and follow-up by intervention arm.
Mean (Standard Deviation)a | Provider-initiated at baseline (n=21) | Patient-initiated at baseline (n=20) | Provider-initiated at follow-up (n=13) | Patient-initiated at follow-up (n=12) | ||
I need up to date information | 1.8 (0.5) | 1.5 (0.6) | .12 | 1.8 (0.9) | 2.0 (1.3) | >.99 |
My family and/or partner needs information relevant to them | 1.7 (0.8) | 1.6 (0.7) | .70 | 1.3 (0.5) | 1.6 (0.9) | .70 |
I need information provided in a way that I can understand | 1.6 (0.5) | 1.9 (1.0) | .66 | 1.6 (0.5) | 2.0 (1.1) | .56 |
I need the very best medical care | 1.8 (0.4) | 2.0 (0.3) | .11 | 1.7 (0.5) | 2.0 (0.8) | .45 |
I need local health care services that are available when I require them | 1.5 (0.5) | 2.1 (1.0) | .03 | 1.6 (0.5) | 1.9 (1.4) | .91 |
I need to feel like I am managing my health together with the medical team | 2.1 (0.9) | 2.2 (0.8) | .61 | 1.7 (0.7) | 2.3 (0.9) | .13 |
I need to know that all my doctors talk to each other to coordinate my care | 2.2 (1.3) | 2.6 (1.2) | .08 | 2.3 (1.1) | 2.9 (1.5) | .34 |
I need any complaints regarding my care to be properly addressed | 1.8 (0.9) | 2.0 (1.0) | .46 | 1.5 (0.5) | 1.6 (0.9) | >.99 |
I need access to complementary and/or alternative therapy services | 1.7 (1.0) | 1.9 (1.2) | .69 | 1.5 (0.7) | 1.6 (0.9) | .84 |
I need help to reduce stress in my life | 1.9 (0.9) | 1.8 (1.0) | .46 | 2.0 (1.1) | 1.4 (0.5) | .15 |
I need help to manage ongoing side effects and/or complications of treatment | 1.4 (0.5) | 1.8 (1.1) | .32 | 1.9 (0.9) | 1.7 (0.7) | .70 |
I need help to adjust to changes in my quality of life as a result of my cancer | 1.8 (1.0) | 2.0 (1.2) | .91 | 1.5 (0.7) | 1.5 (0.7) | .90 |
I need help with having a family due to fertility problems | 1.1 (0.2) | 1.0 (0.0) | .35 | 1.0 (0.0) | 1.0 (0.0) | -c |
I need assistance with getting and/or maintaining employment | 1.1 (0.5) | 1.1 (0.2) | .58 | 1.0 (0.0) | 1.1 (0.3) | .39 |
I need help to find out about financial support and/or government benefits to which I am entitled | 1.4 (1.0) | 1.6 (1.2) | .63 | 1.0 (0.0) | 1.0 (0.0) | -c |
Due to my cancer, I need help getting life and/or travel insurance | 1.1 (0.2) | 1.5 (0.9) | .12 | 1.0 (0.0) | 1.2 (0.6) | .39 |
Due to my cancer, I need help accessing legal services | 1.2 (0.9) | 1.2 (0.5) | .58 | 1.0 (0.0) | 1.0 (0.0) | -c |
I need more accessible hospital parking | 1.4 (0.8) | 1.8 (1.2) | .25 | 1.0 (0.0) | 1.2 (0.4) | .19 |
I need help to manage my concerns about the cancer coming back | 2.6 (1.3) | 2.3 (1.4) | .34 | 2.3 (1.3) | 2.4 (1.4) | >.99 |
I need emotional support to be provided for me | 1.8 (0.9) | 1.5 (0.8) | .27 | 1.7 (1.1) | 1.5 (0.7) | .75 |
I need help to know how to support my partner and/or family | 1.5 (0.8) | 1.7 (1.1) | .78 | 1.3 (0.7) | 1.2 (0.4) | .88 |
I need help to deal with the impact that cancer has had on my relationship with my partner | 1.5 (0.9) | 1.6 (1.0) | .96 | 1.5 (0.9) | 1.1 (0.3) | .22 |
I need help with developing new relationships after my cancer | 1.2 (0.9) | 1.2 (0.7) | >.99 | 1.1 (0.3) | 1.0 (0.0) | .34 |
I need to talk to others who have experienced cancer | 1.8 (1.1) | 1.6 (1.0) | .45 | 1.5 (0.7) | 1.4 (0.7) | .61 |
I need help to handle the topic of cancer in social and/or work situations | 1.8 (1.1) | 1.5 (1.0) | .23 | 1.1 (0.3) | 1.4 (0.7) | .33 |
I need help to adjust to changes to the way I feel about my body | 1.7 (1.0) | 1.4 (0.9) | .13 | 1.5 (0.9) | 1.3 (0.7) | .54 |
I need help to address problems with my/our sex life | 1.3 (0.8) | 1.6 (1.2) | .84 | 1.2 (0.4) | 1.5 (0.7) | .40 |
I need an ongoing case manager to whom I can go to find out about services whenever they are needed | 1.9 (1.3) | 2.2 (1.5) | .57 | 1.5 (1.0) | 1.6 (1.2) | >.99 |
I need help to move on with my life | 1.7 (1.1) | 1.7 (1.2) | .75 | 1.4 (0.7) | 1.4 (0.7) | .81 |
I need help to cope with changes to my belief that nothing bad will ever happen in my life | 1.5 (0.9) | 1.3 (0.7) | .54 | 1.9 (1.1) | 1.4 (0.9) | .13 |
I need help to cope with others not acknowledging the impact that cancer has had on my life | 1.4 (0.8) | 1.4 (1.0) | .58 | 1.8 (1.3) | 1.0 (0.0) | .06 |
I need help to deal with my own and/or others expectations of me as a “cancer survivor” | 1.6 (1.0) | 1.6 (1.1) | .96 | 1.9 (1.3) | 1.2 (0.6) | .09 |
I need help to try to make decisions about my life in the context of uncertainty | 1.5 (0.8) | 1.5 (1.1) | .84 | 1.7 (1.1) | 1.3 (0.7) | .49 |
I need help to explore my spiritual beliefs | 1.5 (0.6) | 1.3 (0.6) | .27 | 1.1 (0.3) | 1.1 (0.3) | >.99 |
I need help to make my life count | 1.3 (0.5) | 1.5 (0.9) | .74 | 1.2 (0.4) | 1.3 (0.7) | .96 |
aMean scores with 1=no need, 2=met need, 3=weak unmet need, 4=moderate unmet need, 5=strong unmet need.
b
cFor this question, all patients reported the same answer at follow-up, so there is no
In terms of changes on the CaSUN from baseline to follow-up (
Cancer Survivors’ Unmet Needs change from baseline to follow-up by intervention arm.
Mean (Standard Deviation) | Changea in provider-initiated arm (n=13) | Changea in patient-initiated arm (n=12) | |||
I need up to date information | 0 (0.9) | >.99 | 0.4 (1.0) | .34 | .37 |
My family and/or partner needs information relevant to them | −0.5 (0.5) | .04 | −0.1 (0.5) | .77 | .11 |
I need information provided in a way that I can understand | −0.1 (0.6) | .77 | 0.3 (1.5) | .58 | .74 |
I need the very best medical care | −0.3 (0.5) | .15 | −0.1 (0.6) | .77 | .45 |
I need local health care services that are available when I require them | 0.1 (0.6) | .77 | −0.3 (1.1) | .48 | .23 |
I need to feel like I am managing my health together with the medical team | −0.4 (0.7) | .13 | 0.3 (1.0) | .41 | .11 |
I need to know that all my doctors talk to each other to coordinate my care | −0.1 (1.2) | .89 | 0.4 (1.1) | .28 | .37 |
I need any complaints regarding my care to be properly addressed | −0.2 (0.6) | .42 | −0.4 (0.8) | .20 | .72 |
I need access to complementary and/or alternative therapy services | 0.0 (0.9) | >.99 | −0.5 (1.2) | .27 | .45 |
I need help to reduce stress in my life | 0.2 (1.1) | .59 | −0.1 (0.8) | .85 | .82 |
I need help to manage ongoing side effects and/or complications of treatment | 0.3 (1.0) | .37 | 0.0 (1.3) | .82 | .82 |
I need help to adjust to changes in my quality of life as a result of my cancer | −0.1 (0.7) | .77 | −0.1 (1.3) | >.99 | .82 |
I need help with having a family due to fertility problems | 0.0 (0.0) | -d | 0.0 (0.0) | -d | -d |
I need assistance with getting and/or maintaining employment | 0.0 (0.0) | -d | 0.0 (0.5) | >.99 | >.99 |
I need help to find out about financial support and/or government benefits to which I am entitled | 0.0 (0.0) | -d | −0.5 (1.0) | .37 | .19 |
Due to my cancer, I need help getting life and/or travel insurance | −0.1 (0.3) | >.99 | −0.5 (1.0) | .37 | .56 |
Due to my cancer, I need help accessing legal services | 0.0 (0.0) | -d | −0.3 (0.7) | .37 | .19 |
I need more accessible hospital parking | −0.3 (0.7) | .37 | −0.2 (0.6) | .42 | .93 |
I need help to manage my concerns about the cancer coming back | −0.3 (0.5) | .15 | 0.7 (1.2) | .09 | .03 |
I need emotional support to be provided for me | 0.0 (0.7) | >.99 | 0.1 (0.9) | >.99 | .77 |
I need help to know how to support my partner and/or family | −0.3 (0.7) | .37 | −0.5 (1.1) | .27 | .97 |
I need help to deal with the impact that cancer has had on my relationship with my partner | −0.2 (0.4) | .35 | −0.5 (0.8) | .17 | .60 |
I need help with developing new relationships after my cancer | 0.1 (0.3) | >.99 | −0.3 (0.9) | >.99 | .19 |
I need to talk to others who have experienced cancer | −0.3 (0.7) | .23 | −0.1 (0.8) | .85 | .39 |
I need help to handle the topic of cancer in social and/or work situations | −0.8 (0.8) | .03 | −0.2 (0.6) | .42 | .08 |
I need help to adjust to changes to the way I feel about my body | −0.2 (1.0) | .71 | −0.4 (0.8) | .20 | .81 |
I need help to address problems with my/our sex life | −0.2 (0.4) | .35 | −0.2 (1.3) | .71 | .57 |
I need an ongoing case manager to whom I can go to find out about services whenever they are needed | −0.5 (1.1) | .20 | −0.6 (1.1) | .11 | .79 |
I need help to move on with my life | 0.0 (0.7) | >.99 | −0.3 (0.9) | >.99 | .69 |
I need help to cope with changes to my belief that nothing bad will ever happen in my life | 0.0 (0.7) | >.99 | 0.3 (1.0) | .59 | .72 |
I need help to cope with others not acknowledging the impact that cancer has had on my life | 0.2 (1.2) | .85 | −0.3 (0.7) | .37 | .46 |
I need help to deal with my own and/or others expectations of me as a “cancer survivor” | 0.1 (1.5) | >.99 | −0.2 (1.0) | .71 | .68 |
I need help to try to make decisions about my life in the context of uncertainty | −0.1 (0.6) | .77 | −0.2 (0.8) | .59 | >.99 |
I need help to explore my spiritual beliefs | −0.6 (0.5) | .04 | −0.2 (0.8) | .59 | .17 |
I need help to make my life count | −0.1 (0.6) | .77 | −0.1 (1.2) | >.99 | .75 |
aPositive mean changes indicate more unmet needs; negative mean changes indicate less unmet need.
b
c
dFor this question, all patients reported the same answer at baseline and follow-up, so there is no
On the PLANS (
We also found no statistically significant differences in mean scores by intervention arm at follow-up. Again, almost all of the 11 knowledge items had mean scores ≥3.0. Among patients with follow-up in the provider-initiated group, the 2 items with mean scores <3.0 were being clear on normal symptoms (2.9) and knowing symptoms to look for (2.8). Among patients with follow-up in the patient-initiated group, the 2 items with mean scores <3.0 were communication among cancer care providers (2.8) and communication with PCP (2.7). For the 5 confidence items, scores ranged from 7.6-9.7 in the provider-initiated arm and 7.7-9.8 in the patient-initiated arm, with the same item rated lowest (health care providers communicating well) and highest (going to follow-up appointments) in both groups, similar to baseline.
Cancer Survivors’ Unmet Needs positive change items at baseline and follow-up by intervention arm.
n (%) | Provider-initiated at baseline (n=21) | Patient-initiated at baseline (n=20) | Provider-initiated at follow-up (n=13) | Patient-initiated at follow-up (n=12) | |
I have benefited from contact with other cancer survivors and/or their families | |||||
5 (23.8) | 2 (10.0) | 1 (7.7) | 2 (16.7) | ||
11 (52.4) | 10 (50.0) | 9 (69.2) | 6 (50.0) | ||
2 (9.5) | 3 (15.0) | 1 (7.7) | 1 (8.3) | ||
3 (14.3) | 5 (25.0) | 2 (15.4) | 3 (25.0) | ||
I focus more on things that are important to me | |||||
10 (47.6) | 9 (45.0) | 5 (38.5) | 6 (50.0) | ||
9 (42.9) | 9 (45.0) | 7 (53.8) | 5 (41.7) | ||
0 (0) | 1 (5.0) | 0 (0) | 1 (8.3) | ||
2 (9.5) | 1 (5.0) | 1 (7.7) | 0 (0) | ||
I realize how precious life is | |||||
14 (66.7) | 10 (50.0) | 9 (69.2) | 6 (50.0) | ||
6 (28.6) | 9 (45.0) | 3 (23.1) | 6 (50.0) | ||
0 (0) | 0 (0) | 0 (0) | 0 (0) | ||
1 (4.8) | 1 (5.0) | 1 (7.7) | 0 (0) | ||
I have made lots of positive changes in my life | |||||
10 (47.6) | 3 (15.0) | 5 (38.5) | 2 (16.7) | ||
6 (28.6) | 8 (40.0) | 5 (38.5) | 4 (33.3) | ||
2 (9.5) | 4 (20.0) | 1 (7.7) | 2 (16.7) | ||
3 (14.3) | 5 (25.0) | 2 (15.4) | 4 (33.3) | ||
I have grown as a person | |||||
7 (33.3) | 5 (25.0) | 3 (23.1) | 4 (33.3) | ||
12 (57.1) | 10 (50.0) | 9 (69.2) | 5 (41.7) | ||
1 (4.8) | 0 (0) | 0 (0) | 0 (0) | ||
1 (4.8) | 5 (25.0) | 1 (7.7) | 3 (25.0) | ||
I appreciate my relationships with others more | |||||
11 (52.4) | 7 (35.0) | 5 (38.5) | 4 (33.3) | ||
9 (42.9) | 12 (60.0) | 8 (61.5) | 7 (58.3) | ||
1 (4.8) | 0 (0) | 0 (0) | 0 (0) | ||
0 (0) | 1 (5.0) | 0 (0) | 1 (8.3) |
Preparing for Life as a (New) Survivor Scale at baseline and follow-up by intervention arm.
Mean (Standard Deviation)a | Provider-initiated at baseline (n=21) | Patient-initiated at baseline (n=20) | Provider-initiated at follow-up (n=13) | Patient-initiated at follow-up (n=12) | ||
I know which health care providers to call with questions about my |
3.6 (0.7) | 3.6 (0.6) | >.99 | 3.5 (0.7) | 3.5 (0.7) | .77 |
I am clear which health care providers to call if I have questions about |
3.5 (0.6) | 3.5 (0.6) | .88 | 3.3 (0.8) | 3.5 (0.7) | .66 |
I am clear what symptoms are normal for me to experience | 3.1 (0.7) | 3.2 (0.6) | .49 | 2.9 (0.6) | 3.2 (0.8) | .37 |
I know what symptoms or problems I should be looking for | 3.1 (0.7) | 3.1 (0.7) | .94 | 2.8 (0.6) | 3.2 (0.6) | .11 |
I know how frequently I should be having appointments for follow-up care | 3.4 (0.6) | 3.3 (0.6) | .53 | 3.4 (0.5) | 3.2 (0.8) | .56 |
I am always clear about the purpose of my visits | 3.3 (0.7) | 3.4 (0.6) | .79 | 3.4 (0.5) | 3.5 (0.7) | .65 |
I know what tests are part of my follow-up care | 3.0 (0.8) | 3.1 (0.8) | .77 | 3.3 (0.6) | 3.2 (0.8) | .73 |
I know other things I need to do to take the best care of myself | 3.3 (0.6) | 3.1 (0.7) | .54 | 3.2 (0.6) | 3.6 (0.5) | .10 |
The health care providers who treat me for cancer communicate well with each other | 3.2 (0.9) | 3.1 (1.0) | .83 | 3.3 (0.5) | 2.8 (1.0) | .28 |
The health care providers who treat me for cancer communicate well with my primary care/family provider | 3.3 (0.7) | 2.9 (1.0) | .31 | 3.0 (0.5) | 2.7 (1.0) | .46 |
I feel prepared for what to expect over the next year | 2.9 (0.8) | 3.0 (0.7) | .97 | 3.1 (0.5) | 3.0 (0.9) | .97 |
Mean (SD)b | ||||||
You will call or ask questions of your health care providers when you need to | 8.8 (1.5) | 8.8 (2.0) | .72 | 8.9 (1.5) | 8.6 (2.7) | .45 |
You will go to all your follow-up appointments | 9.7 (0.7) | 9.9 (0.2) | .09 | 9.7 (0.6) | 9.8 (0.6) | .45 |
You will do what you need to do to take the best care of yourself | 9.2 (1.0) | 8.9 (1.6) | .85 | 8.9 (1.0) | 9.2 (1.2) | .50 |
Your health care providers will communicate well with each other during the next year | 8.4 (1.9) | 7.4 (2.5) | .18 | 7.6 (1.2) | 7.7 (2.7) | .41 |
There is a well-coordinated plan for your cancer care | 8.7 (1.4) | 8.3 (2.5) | .79 | 8.0 (1.4) | 8.2 (2.9) | .15 |
a1=strongly disagree to 4=strongly agree.
b1=not at all confident to 10=extremely confident.
c
Changes on the PLANS tended to be small in both groups (
Preparing for Life as a (New) Survivor survey change from baseline to follow-up by intervention arm.
Item | Changea in provider-initiated arm (n=13) | Changea in patient-initiated arm (n=12) | ||||
I know which health care providers to call with questions about my |
0.0 (0.6) | >.99 | −0.3 (0.7) | .23 | .28 | |
I am clear which health care providers to call if I have questions about |
−0.2 (0.7) | .48 | −0.2 (0.8) | .48 | .92 | |
I am clear what symptoms are normal for me to experience | −0.2 (0.7) | .48 | 0.0 (0.5) | >.99 | .51 | |
I know what symptoms or problems I should be looking for | −0.2 (0.7) | .34 | 0.1 (0.5) | .77 | .28 | |
I know how frequently I should be having appointments for follow-up care | 0.0 (0.7) | >.99 | −0.1 (0.9) | .85 | .95 | |
I am always clear about the purpose of my visits | 0.0 (0.6) | >.99 | −0.1 (0.5) | .77 | .72 | |
I know what tests are part of my follow-up care | 0.5 (0.9) | .10 | 0.0 (1.0) | >.99 | .21 | |
I know other things I need to do to take the best care of myself | 0.0 (0.8) | >.99 | 0.3 (0.8) | .30 | .30 | |
The health care providers who treat me for cancer communicate well with each other | −0.1 (0.5) | .77 | −0.5 (1.2) | .34 | .50 | |
The health care providers who treat me for cancer communicate well with my primary care/family provider | −0.1 (0.4) | >.99 | −0.1 (0.7) | .77 | >.99 | |
I feel prepared for what to expect over the next year | 0.0 (0.8) | >.99 | −0.2 (0.8) | .59 | .51 | |
You will call or ask questions of your health care providers when you need to | 0.2 (0.4) | .35 | −0.7 (2.8) | .79 | .94 | |
You will go to all your follow-up appointments | 0.1 (0.8) | .85 | −0.1 (0.3) | >.99 | .68 | |
You will do what you need to do to take the best care of yourself | −0.2 (1.5) | .72 | −0.2 (0.8) | .59 | .64 | |
Your health care providers will communicate well with each other during the next year | −1.2 (1.2) | .01 | 0.1 (3.3) | .63 | .04 | |
There is a well-coordinated plan for your cancer care | −0.6 (1.5) | .16 | −0.6 (2.5) | .28 | .74 |
aPositive mean changes indicate improvement; negative mean changes indicate worsening.
b
c
In qualitative interviews conducted at follow-up, patients expressed ongoing needs related to information and support, with almost all of those interviewed describing some ongoing negative impact of cancer in their lives. Patients discussed the emotional impacts of cancer, including depression, fatigue, anxiety, and fear. Some expressed emotions related to concerns about recurrence, and there were some descriptions of physical impacts such as pain. Even those who initially described cancer as nonimpactful tended to describe ways in which it had affected them as the interview unfolded. Several patients expressed some belief that the SCP would improve communication that would in turn help to address these concerns:
One element of the SCP process that was seen as particularly attractive and useful for patients was “having everything in one place,” as a “quick reference document.” In general, patients seemed to like how plans made connections to health concerns other than their cancer, although not all interviewees understood why noncancer information was included on the plan. The patients who were interviewed at follow-up expressed almost universal confidence in their ability to get the care that they needed in the coming months and years. This group of patients tended to portray themselves as proactive and involved in the management of their health and health care. In some cases, patients described already having been engaged in information gathering and maintenance, but expressed that the SCP further facilitated this process. In addition to their own capacity and the value that the SCP provided, patients explained their confidence about future care with reference to their family given the quality of their health insurance and their health care providers. The SCP was seen as helping patients to identify “who to go to” and “who is responsible for what” as they moved beyond acute treatment.
For the process of plan completion, several participants articulated that either putting together the plan or even simply receiving it had served to educate them about their cancer and the care received and to provide useful information that they may not have even realized they were lacking. When we asked about the potential value of the plan for improving communication with one’s PCP, patients described having existing, functional relationships with their PCPs. Patients did not mention the Web-based format of the SCP as being problematic. Their responses varied in relation to the question about whether or not they had shared their plans with their PCP, but generally patients expressed the opinion that the information provided and the format in which it was provided would be helpful in their communication with their PCP. Even patients who had not yet shared their plans with their PCP generally expressed an intention to do so. One reason provided for why they might not share a plan was that the PCP was perceived as being too busy to have time to deal with the SCP. Some patients were unsure as to whether they (or someone else) had shared the SCP with their PCP, and others expressed some uncertainty as to whether their oncologist or their internist would now act as their PCP. Patients were not universally confident that PCPs had the necessary expertise to manage their care: one patient expressed concern that their PCP would not be familiar enough with the anemia associated with his radiation treatment to effectively treat him.
In line with much of what the clinicians discussed, the timing of plan provision emerged as an important issue with patients, with several expressing a desire to have the plan earlier in the process. Several patients also noted that the plans seemed to be more summative than forward looking (planning), and some raised questions about how the plan might be updated over time.
In terms of content, most patients expressed satisfaction with the information provided. Areas for additional content mentioned by 1 or 2 patients included diet, contact information for specialists and information on clinical trials. A few mentioned aspects of the information provided that they did not understand; the one specific example provided was the idea of “ongoing toxicities.” There was also a potential concern expressed about the accuracy of the content provided by the providers completing the form.
In this mixed-methods study, we evaluated 2 models of Web-based survivorship care planning in the real-world context of 2 academically-affiliated, community hospitals. This study provides preliminary evidence of the feasibility and perceived value of 2 SCP templates, as well as possibly informing the design and implementation of future, larger studies. The combined qualitative and quantitative data provide important insights regarding the feasibility and value of the 2 SCP templates tested here, as well as survivorship care planning in general.
In terms of feasibility, a number of challenges emerged, irrespective of the study arm. First, the somewhat limited participation of eligible oncologists in this research initiative (33%) suggests that the imminent Commission on Cancer accreditation standards [
Our study reveals a need for explicit consideration of how preparing and delivering the SCP should be integrated into existing practices and routines of care provision. This finding is supported by the assertion made by Keesing, McNamara, and Rosenwax [
These findings also inform our understanding of the value of survivorship care planning. The Web-based nature of the 2 SCP modalities did not emerge as problematic, but nor was this sufficient to overcome the feasibility challenges of providing SCPs. Although both providers and patients generally supported the importance of SCPs during the qualitative interviews, data from the CaSUN and PLANS questionnaires at baseline demonstrated that the patients who enrolled in the study had relatively few unmet needs and high
In interpreting these findings, it is important to note that the 2-month follow-up was designed to evaluate delivery of the plan, not the impact of it on the secondary patient-reported outcome measures. This study was conducted in only 2 hospitals and is intended to provide preliminary evidence of the feasibility and possible value of these 2 Web-based survivorship care planning approaches and to inform the design of larger studies. The sample size was determined based on feasibility and the analysis of the quantitative data intended to inform power calculations for future studies. However, given the small numbers, the results should be applied cautiously if used to support power calculations. Statistically significant
Strengths of this study include collection of both quantitative and qualitative data from both patients and providers in 2 academically-affiliated, community hospitals. Furthermore, we used a randomized design to compare 2 SCP templates. The findings of this study provide preliminary evidence regarding the advantages and disadvantages of the 2 Web-based templates, as well as issues with survivorship care planning in general, and can inform future research in larger populations with longer follow-up. In summary, the findings of this study suggest that the primary barriers to survivorship care planning are not the templates (the
Journey Forward Care Plan Builder Template.
Journey Forward My Care Plan Template.
CONSORT-EHEALTH checklist V1.6.2 [
Cancer Survivor’s Unmet Needs
electronic medical records
Institute of Medicine
Preparing for Life as a (New) Survivor
primary care provider
Survivorship Care Plan
This study was supported by the Journey Forward consortium through contracts from Anthem and Genentech with the Johns Hopkins Bloomberg School of Public Health. Drs. Smith and Snyder are members of the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins (P30 CA 006973). All aspects of this research, including the design and conduct of the study and analysis of resulting data, are solely those of the authors.
None declared.