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When seniors are discharged from the hospital, many will require additional support and therapy to regain their independence and return safely home.1,2 Most seniors do not understand what their support needs will entail or the differences between therapy choices.3 To complicate the issue, seniors are often incapacitated and unable to make discharge selections for themselves.
Consequently, discharge planners and social workers often explain options to family members and loved ones, who frequently feel overwhelmed.4,5 While often balancing jobs, loved ones are divided between wanting to stay with the senior in the hospital and driving to area skilled nursing facilities (SNFs) for consideration. Discharges are delayed waiting for families to make visits and choose an SNF. Longer lengths of stay are detrimental to seniors due to the increased risks of infection, functional loss, and cognitive decline.6
Although seniors comprised only 12% of the US population in 2003,7 they accounted for one-third of all hospitalizations, over 13.2 million hospital stays.8 Hospital stays for seniors resulted in hospital charges totaling nearly $329 billion, or 43.6% of national hospital bills in 2003.7 Seniors are also high consumers of postacute care services. By 2050, the number of individuals using long-term care services in any setting (eg, at home, assisted living, or SNFs) will be close to 27 million.9-11 With the knowledge that many seniors will be hospitalized and subsequently require services thereafter, we sought to assist seniors in planning for their hospital discharge needs before they were hospitalized.
Our team developed PlanYourLifespan.org (PYL) to facilitate this planning for postdischarge needs and fill the knowledge gap in understanding postdischarge options. With funding from the Patient Centered Outcomes Research Institute, we aimed to test the effectiveness of PYL on improving knowledge of hospital discharge resources among seniors.
METHODS
PlanYourLifespan.org
PlanYourLifespan.org (PYL) educates users on the health crises that often occur with age and connects them to posthospital and home-based resources available locally and nationally. PYL is personalized, dynamic, and adaptable in that all the information can be changed per the senior’s wishes or changing health needs.
Content of PYL
Previously, we conducted focus groups with seniors about current and perceived home needs and aging-in-place. Major themes of what advanced life events (ALEs) would impact aging-in-place were identified as follows: hospitalizations, falls, and Alzheimer’s.12 We organized PYL around these health-related ALEs. Our multidisciplinary team of researchers, seniors, social workers, caregiver agencies, and Area Agencies on Aging representatives then determined what information and resources should be included.
Each section of PYL starts with a video of a senior discussing their real-life personal experiences, with subsections providing interactive information on what seniors can expect, types of resources available to support home needs, and choices to be made. Descriptions of types of settings for therapy, options available, and links to national/local resources (eg, quality indicators for SNFs) are also included. For example, by entering their zip code, users can identify their neighborhood SNFs, closest Area Agency on Aging, and what home caregiver agencies exist in their area.
Users can save their preferences and revisit their choices at any time. To support communication between seniors and their loved ones, a summary of their choices can be printed or e-mailed to relevant parties. For example, a senior uses PYL and can e-mail these choices to family members, which can stimulate a conversation about future posthospital care expectations.
As inadequate health literacy and cognitive impairment are prevalent among seniors, PYL presents information understandable at all levels of health literacy and sensitive to cognitive load.9 There is simplified, large-font, no mouse scrolling and audio available for the visually impaired.
Study Design and Randomization
To test PYL, a 2-armed (attention control [AC] and PYL intervention), parallel, randomized controlled trial was conducted. Participants were randomly assigned to 1 of the 2 conditions via a pregenerated central randomization list using equal (1:1) allocation and random permuted block design to ensure relatively equal allocation throughout the study. The AC condition exposed participants to the National Institute on Aging-sponsored website, Go4Life.nia.nih.gov, an educational website on physical activity for seniors. This website has comparable design and layout to PYL but does not include information about advanced planning. The AC condition controlled for the possibility that regular contact with the study team may improve outcomes in participants randomized to the intervention website.
The trial was conducted from October 2014 to September 2015 in Chicago, Illinois; Fort Wayne, Indiana; and Houston, Texas. Inclusion criteria were as follows: age 65 and older, English-speaking, scoring ≥4 questions correctly on the Brief Cognitive Screen,14 and current self-reported use of a computer or smartphone with internet. Participants were excluded if they had previously participated in the focus groups or beta testing of the PYL website. Community-based patient partners/stakeholders drove subject recruitment in their communities through word of mouth, e-mail bursts, newsletters, and flyers. At the Area Agency on Aging and community centers where services such as food vouchers and case management are provided, participants were recruited on-site and given study information. At the clinical sites, staff referred potential participants. Study materials such as flyers and information sheets were also located in the clinic waiting rooms. The Villages, nonprofit, grassroots, membership organizations that are redefining aging by being a key resource to community members wishing to age in place, heavily relied on electronic recruitment using their regular e-newsletters and e-mail lists to recruit potential participants. Potential subjects were also recruited by distributing flyers at local senior centers and senior housing buildings. Interested seniors contacted research staff who explained the study and assessed their eligibility. If eligible, subjects were scheduled for a face-to-face interview.
At the face-to-face encounter, all study subjects completed a written consent, answered baseline questions, and were randomized to either arm. Next, research staff introduced all study subjects to the website to which they were randomized and provided instructions on its use. Staff were present to assist with questions as needed on navigation but did not assist with decision making for either website. A minimum of 15 minutes and a maximum of 45 minutes was allotted for navigating either website. After navigating their website, participants were administered an immediate in-person posttest survey. One month and 3 months after the face-to-face encounter, research staff contacted all study participants over the phone to complete a follow-up survey. Staff attempted to reach participants up to 3 times by phone. Data were entered into Research Electronic Data Capture survey software.15 This study was approved by the Northwestern University Institutional Review Board.
Understanding of Posthospital Discharge and Home Services
As part of the larger trial, which included behavioural outcomes that will be reported elsewhere, we sought to explore the effects of PYL on participants’ knowledge and understanding of posthospital discharge and home services (UHS). Participants were asked to respond to 6 questions at baseline, immediate posttest, and at the 1- and 3-month follow-up time points. Knowledge items were developed by the study team in conjunction with the patient/partner stakeholders. UHS scores were calculated as the sum of the 6 questions (each scored 0 if incorrect and 1 if correct) with a possible range of 0-6.
Covariates
Demographic information, self-reported health, importance of religion, and existence of a power of attorney, living will, advanced directive (eg, Physician Orders for Life-Sustaining Treatment) were obtained via self-report. Participants were asked about their general and social self-efficacy using the validated Self-efficacy Scale16 and their social support using the Lubben Social Network Scale–6.17 Health literacy was assessed using the Rapid Estimate of Adult Literacy in Medicine–Short Form.18 To measure burden of disease, participant comorbidities were measured using a nonvalidated 9-item dichotomous response condition list, which included some items adapted from the Charlson Comorbidity Index and the Elixhauser Comorbidity Index.
Statistical Analysis
Data analysis included all available data in the intention-to-treat dataset. As UHS was collected at multiple time points up to 3 months postintervention, we employed linear- mixed modeling with random participant effect and fixed arm, time, and time-by-arm interaction terms. The time-by-arm interaction allows for comparison of UHS slopes (or trajectories) across arms. Analyses explored multiple potential covariates, including current utilization of services, physical function, comorbidities, social support, health literacy, self-efficacy, and sociodemographics. Those covariates found to have a significant association (P < 0.05) with outcome were considered for inclusion in the overall model selection process. Ultimately, we developed a final parsimonious, adjusted longitudinal model with primary predictors of time, arm, and their interaction, controlling for only significant baseline variables following a manual backward selection method. All analyses were conducted in SAS software (version 9.4, copyright 2012, The SAS Institute Inc., Cary, North Carolina).
RESULTS
Table 3 illustrates linear mixed model results both failing to adjust and adjusting for potentially influential baseline covariates. In both instances, the interaction term (arm-by-time) was highly significant (P < 0.0001) in predicting UHS score, suggesting that, when compared to the AC arm, the intervention arm exhibited a large mean slope in UHS score over time. That is, understanding home services score tended to increase at a faster rate for those in the active arm. Higher levels of income (P = 0.0191), literacy (P = 0.0036), and education (P = 0.0042) were associated with increased UHS scores; however, male sex (P = 0.0023) and history of high blood pressure (P = 0.0409) or kidney disease (P = 0.0278) were negatively associated with UHS scores.
CONCLUSION/DISCUSSION
The results of our study show that among seniors, PYL improved their understanding of home-based services and the services that may be required following a hospitalization. Educating seniors about what to expect regarding the transition home from a hospital before a hospitalization even occurs may enable seniors and their families to plan ahead instead of reacting to a hospitalization. PYL, a national, publicly available tool with links to local resources may potentially help in advancing transitional discharge care to prior to a hospitalization.
To our knowledge, this is one of the first websites and trials devoted to planning for seniors’ health trajectory as they age into their 70s, 80s, 90s, and 100s. Clinicians regularly discuss code status and powers of attorney during their end-of-life discussions with patients. We encourage clinicians to ask patients, “What about the 10 to 20 years before you die? Have you considered what you will do if you get sick or need help at home?” While not replacing a social worker, the ability of PYL to connect seniors to local resources makes it somewhat of a “virtual social worker.” With many physician practices unable to afford social workers, PYL provides a free-of-charge means of connecting seniors to area resources.
The study participants were in general white, educated, and in reasonably good health. This may be a limitation of this study given that it could impact the generalizability of the study results, as we are unable to know for certain if these same results would be observed with participants who have lower educational levels and are in poor health. Power considerations in this study did not account for comparison of outcomes within specific subgroups so we were unable to assess outcomes in groups such as those with limited health literacy, low social support, or low self-efficacy. The trial was also limited by our inability to collect information on whether or not the knowledge gains observed in the study led to any measureable outcomes. Due to the relatively short follow-up time, we were unable to ascertain whether any study participants were hospitalized during the study follow-up period and if so, if exposure to PYL had any impact on patient anxiety, length of hospital stay, and/or caregiver burden. We were also unable to assess patients’ ability to utilize and carry out their posthospitalization discharge plans if they had one in place. Future studies with longer follow-up are needed to determine these important, measurable outcomes.
Potential implications of planning for a senior’s lifespan are expansive. If hospitalized seniors knew their preferred SNF for subacute rehabilitation on the first day of their hospitalization, hospital lengths of stay could potentially be reduced. If families knew which caregiver agencies, Area Agency on Aging, or Village their senior wished to use, obtaining services would perhaps be easier to accomplish.
Acknowledgments
This work was supported through a Patient-Centered Outcomes Research Institute Award (IH-12-11-4259). Dr. Lindquist and Dr. Ciolino had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. Research reported in this publication was also supported, in part, by the National Institutes of Health’s National Center for Advancing Translational Sciences, Grant Number UL1TR000150.
Disclaimer
All statements in this manuscript, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute, its Board of Governors or Methodology Committee, or the National Institutes of Health.
Disclosure: The authors have nothing to report.
1. Campbell SE, Seymour DG, Primrose WR, ACMEPLUS Project. A systematic literature review of factors affecting outcome in older medical patients admitted to hospital. Age Ageing. 2004;33:110-115. PubMed
2. Forster AJ, Clark HD, Menard A, et al. Adverse events among medical patients after discharge from hospital. CMAJ. 2004; 70:345-349. PubMed
3. Kane RL Finding the right level of posthospital care: “We didn’t realize there was any other option for him”. JAMA. 2011;305(3):284-293. PubMed
4. Shepperd S, McClaran J, Phillips CO, et al. Discharge planning from hospital to home. Cochrane Database Syst Rev. 2010;(1):CD000313. PubMed
5. Horwitz LI, Moriarty JP, Chen C, et al. Quality of discharge practices and patient understanding at an academic medical center. JAMA Intern Med. 2013;173:1715-1722. PubMed
6. Creditor MC. Hazards of hospitalization of the elderly. Ann Intern Med. 1993;118(3):219-223. PubMed
7. U.S. Census Bureau, Population Division, Census 2003. https://www.census.gov/programs-surveys/saipe/data/datasets.2003.html. Originally accessed September 1, 2016.
8. Russo, C. A., Elixhauser, A. Hospitalizations in the Elderly Population, 2003. Statistical Brief #6. May 2006. Agency for Healthcare Research and Quality, Rockville, MD. http://www.hcup-us.ahrq.gov/reports/statbriefs/sb6.pdf. Accessed September 1, 2017.
9 U.S. Department of Health and Human Services, and U.S. Department of Labor. The future supply of long-term care workers in relation to the aging baby boom generation: Report to Congress. Washington, DC: Office of the Assistant Secretary for Planning and Evaluation, 2003. http:aspe.hhs.gov/daltcp/reports/ltcwork.htm. Accessed September 1, 2016.
10. The Henry J. Kaiser Foundation. Long-term Care: Medicaid’s role and challenges [Publication #2172]. Washington, DC: 1999.
11. AARP. Beyond 50.2003: A Report to the Nation on Independent Living and Disability, 2003, http://www.aarp.org/research/health/disabilities/aresearch-import-753.html. Accessed September 1, 2016.
12. Lindquist LA, Ramirez-Zohfeld V, Sunkara P, et al. Advanced Life Events (ALEs) that Impede Aging-in-Place among Seniors. Arch Gerontol Geriatrs. 2016;64:90-95. PubMed
13. Doak CC, Doak LG, Root JH. Teaching Patients with Low Literacy Skills. Philadelphia, PA: JB Lippincott Co.; 1996.
14. Callahan CM, Unverzagt FW, Hui SL, Perkins AJ, Hendrie HC. Six-item screener to identify cognitive impairment among potential subjects for clinical research. Med Care. 2002;40:771-781. PubMed
15. Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Gonzalez J, Conde JG. Research electronic data capture (REDCap) - A metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42(2):377-381. PubMed
16. Sherer M, Maddux JE, Mercandante B, Prentice-Dunn S, Jacobs B, Rogers RW. The Self Efficacy Scale: Construction and Validation. Psychol Rep. 1982;51(3):663-671.
17. Lubben JE. Assessing social networks among elderly populations. Fam Community Health. 1988;11(3):42-52.
18. Arozullah AM, Yarnold PR, Bennett CL, et al. Development and validation of the Rapid Estimate of Adult Literacy in Medicine. Medical Care. 2007;45(11):1026-1033. PubMed
When seniors are discharged from the hospital, many will require additional support and therapy to regain their independence and return safely home.1,2 Most seniors do not understand what their support needs will entail or the differences between therapy choices.3 To complicate the issue, seniors are often incapacitated and unable to make discharge selections for themselves.
Consequently, discharge planners and social workers often explain options to family members and loved ones, who frequently feel overwhelmed.4,5 While often balancing jobs, loved ones are divided between wanting to stay with the senior in the hospital and driving to area skilled nursing facilities (SNFs) for consideration. Discharges are delayed waiting for families to make visits and choose an SNF. Longer lengths of stay are detrimental to seniors due to the increased risks of infection, functional loss, and cognitive decline.6
Although seniors comprised only 12% of the US population in 2003,7 they accounted for one-third of all hospitalizations, over 13.2 million hospital stays.8 Hospital stays for seniors resulted in hospital charges totaling nearly $329 billion, or 43.6% of national hospital bills in 2003.7 Seniors are also high consumers of postacute care services. By 2050, the number of individuals using long-term care services in any setting (eg, at home, assisted living, or SNFs) will be close to 27 million.9-11 With the knowledge that many seniors will be hospitalized and subsequently require services thereafter, we sought to assist seniors in planning for their hospital discharge needs before they were hospitalized.
Our team developed PlanYourLifespan.org (PYL) to facilitate this planning for postdischarge needs and fill the knowledge gap in understanding postdischarge options. With funding from the Patient Centered Outcomes Research Institute, we aimed to test the effectiveness of PYL on improving knowledge of hospital discharge resources among seniors.
METHODS
PlanYourLifespan.org
PlanYourLifespan.org (PYL) educates users on the health crises that often occur with age and connects them to posthospital and home-based resources available locally and nationally. PYL is personalized, dynamic, and adaptable in that all the information can be changed per the senior’s wishes or changing health needs.
Content of PYL
Previously, we conducted focus groups with seniors about current and perceived home needs and aging-in-place. Major themes of what advanced life events (ALEs) would impact aging-in-place were identified as follows: hospitalizations, falls, and Alzheimer’s.12 We organized PYL around these health-related ALEs. Our multidisciplinary team of researchers, seniors, social workers, caregiver agencies, and Area Agencies on Aging representatives then determined what information and resources should be included.
Each section of PYL starts with a video of a senior discussing their real-life personal experiences, with subsections providing interactive information on what seniors can expect, types of resources available to support home needs, and choices to be made. Descriptions of types of settings for therapy, options available, and links to national/local resources (eg, quality indicators for SNFs) are also included. For example, by entering their zip code, users can identify their neighborhood SNFs, closest Area Agency on Aging, and what home caregiver agencies exist in their area.
Users can save their preferences and revisit their choices at any time. To support communication between seniors and their loved ones, a summary of their choices can be printed or e-mailed to relevant parties. For example, a senior uses PYL and can e-mail these choices to family members, which can stimulate a conversation about future posthospital care expectations.
As inadequate health literacy and cognitive impairment are prevalent among seniors, PYL presents information understandable at all levels of health literacy and sensitive to cognitive load.9 There is simplified, large-font, no mouse scrolling and audio available for the visually impaired.
Study Design and Randomization
To test PYL, a 2-armed (attention control [AC] and PYL intervention), parallel, randomized controlled trial was conducted. Participants were randomly assigned to 1 of the 2 conditions via a pregenerated central randomization list using equal (1:1) allocation and random permuted block design to ensure relatively equal allocation throughout the study. The AC condition exposed participants to the National Institute on Aging-sponsored website, Go4Life.nia.nih.gov, an educational website on physical activity for seniors. This website has comparable design and layout to PYL but does not include information about advanced planning. The AC condition controlled for the possibility that regular contact with the study team may improve outcomes in participants randomized to the intervention website.
The trial was conducted from October 2014 to September 2015 in Chicago, Illinois; Fort Wayne, Indiana; and Houston, Texas. Inclusion criteria were as follows: age 65 and older, English-speaking, scoring ≥4 questions correctly on the Brief Cognitive Screen,14 and current self-reported use of a computer or smartphone with internet. Participants were excluded if they had previously participated in the focus groups or beta testing of the PYL website. Community-based patient partners/stakeholders drove subject recruitment in their communities through word of mouth, e-mail bursts, newsletters, and flyers. At the Area Agency on Aging and community centers where services such as food vouchers and case management are provided, participants were recruited on-site and given study information. At the clinical sites, staff referred potential participants. Study materials such as flyers and information sheets were also located in the clinic waiting rooms. The Villages, nonprofit, grassroots, membership organizations that are redefining aging by being a key resource to community members wishing to age in place, heavily relied on electronic recruitment using their regular e-newsletters and e-mail lists to recruit potential participants. Potential subjects were also recruited by distributing flyers at local senior centers and senior housing buildings. Interested seniors contacted research staff who explained the study and assessed their eligibility. If eligible, subjects were scheduled for a face-to-face interview.
At the face-to-face encounter, all study subjects completed a written consent, answered baseline questions, and were randomized to either arm. Next, research staff introduced all study subjects to the website to which they were randomized and provided instructions on its use. Staff were present to assist with questions as needed on navigation but did not assist with decision making for either website. A minimum of 15 minutes and a maximum of 45 minutes was allotted for navigating either website. After navigating their website, participants were administered an immediate in-person posttest survey. One month and 3 months after the face-to-face encounter, research staff contacted all study participants over the phone to complete a follow-up survey. Staff attempted to reach participants up to 3 times by phone. Data were entered into Research Electronic Data Capture survey software.15 This study was approved by the Northwestern University Institutional Review Board.
Understanding of Posthospital Discharge and Home Services
As part of the larger trial, which included behavioural outcomes that will be reported elsewhere, we sought to explore the effects of PYL on participants’ knowledge and understanding of posthospital discharge and home services (UHS). Participants were asked to respond to 6 questions at baseline, immediate posttest, and at the 1- and 3-month follow-up time points. Knowledge items were developed by the study team in conjunction with the patient/partner stakeholders. UHS scores were calculated as the sum of the 6 questions (each scored 0 if incorrect and 1 if correct) with a possible range of 0-6.
Covariates
Demographic information, self-reported health, importance of religion, and existence of a power of attorney, living will, advanced directive (eg, Physician Orders for Life-Sustaining Treatment) were obtained via self-report. Participants were asked about their general and social self-efficacy using the validated Self-efficacy Scale16 and their social support using the Lubben Social Network Scale–6.17 Health literacy was assessed using the Rapid Estimate of Adult Literacy in Medicine–Short Form.18 To measure burden of disease, participant comorbidities were measured using a nonvalidated 9-item dichotomous response condition list, which included some items adapted from the Charlson Comorbidity Index and the Elixhauser Comorbidity Index.
Statistical Analysis
Data analysis included all available data in the intention-to-treat dataset. As UHS was collected at multiple time points up to 3 months postintervention, we employed linear- mixed modeling with random participant effect and fixed arm, time, and time-by-arm interaction terms. The time-by-arm interaction allows for comparison of UHS slopes (or trajectories) across arms. Analyses explored multiple potential covariates, including current utilization of services, physical function, comorbidities, social support, health literacy, self-efficacy, and sociodemographics. Those covariates found to have a significant association (P < 0.05) with outcome were considered for inclusion in the overall model selection process. Ultimately, we developed a final parsimonious, adjusted longitudinal model with primary predictors of time, arm, and their interaction, controlling for only significant baseline variables following a manual backward selection method. All analyses were conducted in SAS software (version 9.4, copyright 2012, The SAS Institute Inc., Cary, North Carolina).
RESULTS
Table 3 illustrates linear mixed model results both failing to adjust and adjusting for potentially influential baseline covariates. In both instances, the interaction term (arm-by-time) was highly significant (P < 0.0001) in predicting UHS score, suggesting that, when compared to the AC arm, the intervention arm exhibited a large mean slope in UHS score over time. That is, understanding home services score tended to increase at a faster rate for those in the active arm. Higher levels of income (P = 0.0191), literacy (P = 0.0036), and education (P = 0.0042) were associated with increased UHS scores; however, male sex (P = 0.0023) and history of high blood pressure (P = 0.0409) or kidney disease (P = 0.0278) were negatively associated with UHS scores.
CONCLUSION/DISCUSSION
The results of our study show that among seniors, PYL improved their understanding of home-based services and the services that may be required following a hospitalization. Educating seniors about what to expect regarding the transition home from a hospital before a hospitalization even occurs may enable seniors and their families to plan ahead instead of reacting to a hospitalization. PYL, a national, publicly available tool with links to local resources may potentially help in advancing transitional discharge care to prior to a hospitalization.
To our knowledge, this is one of the first websites and trials devoted to planning for seniors’ health trajectory as they age into their 70s, 80s, 90s, and 100s. Clinicians regularly discuss code status and powers of attorney during their end-of-life discussions with patients. We encourage clinicians to ask patients, “What about the 10 to 20 years before you die? Have you considered what you will do if you get sick or need help at home?” While not replacing a social worker, the ability of PYL to connect seniors to local resources makes it somewhat of a “virtual social worker.” With many physician practices unable to afford social workers, PYL provides a free-of-charge means of connecting seniors to area resources.
The study participants were in general white, educated, and in reasonably good health. This may be a limitation of this study given that it could impact the generalizability of the study results, as we are unable to know for certain if these same results would be observed with participants who have lower educational levels and are in poor health. Power considerations in this study did not account for comparison of outcomes within specific subgroups so we were unable to assess outcomes in groups such as those with limited health literacy, low social support, or low self-efficacy. The trial was also limited by our inability to collect information on whether or not the knowledge gains observed in the study led to any measureable outcomes. Due to the relatively short follow-up time, we were unable to ascertain whether any study participants were hospitalized during the study follow-up period and if so, if exposure to PYL had any impact on patient anxiety, length of hospital stay, and/or caregiver burden. We were also unable to assess patients’ ability to utilize and carry out their posthospitalization discharge plans if they had one in place. Future studies with longer follow-up are needed to determine these important, measurable outcomes.
Potential implications of planning for a senior’s lifespan are expansive. If hospitalized seniors knew their preferred SNF for subacute rehabilitation on the first day of their hospitalization, hospital lengths of stay could potentially be reduced. If families knew which caregiver agencies, Area Agency on Aging, or Village their senior wished to use, obtaining services would perhaps be easier to accomplish.
Acknowledgments
This work was supported through a Patient-Centered Outcomes Research Institute Award (IH-12-11-4259). Dr. Lindquist and Dr. Ciolino had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. Research reported in this publication was also supported, in part, by the National Institutes of Health’s National Center for Advancing Translational Sciences, Grant Number UL1TR000150.
Disclaimer
All statements in this manuscript, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute, its Board of Governors or Methodology Committee, or the National Institutes of Health.
Disclosure: The authors have nothing to report.
When seniors are discharged from the hospital, many will require additional support and therapy to regain their independence and return safely home.1,2 Most seniors do not understand what their support needs will entail or the differences between therapy choices.3 To complicate the issue, seniors are often incapacitated and unable to make discharge selections for themselves.
Consequently, discharge planners and social workers often explain options to family members and loved ones, who frequently feel overwhelmed.4,5 While often balancing jobs, loved ones are divided between wanting to stay with the senior in the hospital and driving to area skilled nursing facilities (SNFs) for consideration. Discharges are delayed waiting for families to make visits and choose an SNF. Longer lengths of stay are detrimental to seniors due to the increased risks of infection, functional loss, and cognitive decline.6
Although seniors comprised only 12% of the US population in 2003,7 they accounted for one-third of all hospitalizations, over 13.2 million hospital stays.8 Hospital stays for seniors resulted in hospital charges totaling nearly $329 billion, or 43.6% of national hospital bills in 2003.7 Seniors are also high consumers of postacute care services. By 2050, the number of individuals using long-term care services in any setting (eg, at home, assisted living, or SNFs) will be close to 27 million.9-11 With the knowledge that many seniors will be hospitalized and subsequently require services thereafter, we sought to assist seniors in planning for their hospital discharge needs before they were hospitalized.
Our team developed PlanYourLifespan.org (PYL) to facilitate this planning for postdischarge needs and fill the knowledge gap in understanding postdischarge options. With funding from the Patient Centered Outcomes Research Institute, we aimed to test the effectiveness of PYL on improving knowledge of hospital discharge resources among seniors.
METHODS
PlanYourLifespan.org
PlanYourLifespan.org (PYL) educates users on the health crises that often occur with age and connects them to posthospital and home-based resources available locally and nationally. PYL is personalized, dynamic, and adaptable in that all the information can be changed per the senior’s wishes or changing health needs.
Content of PYL
Previously, we conducted focus groups with seniors about current and perceived home needs and aging-in-place. Major themes of what advanced life events (ALEs) would impact aging-in-place were identified as follows: hospitalizations, falls, and Alzheimer’s.12 We organized PYL around these health-related ALEs. Our multidisciplinary team of researchers, seniors, social workers, caregiver agencies, and Area Agencies on Aging representatives then determined what information and resources should be included.
Each section of PYL starts with a video of a senior discussing their real-life personal experiences, with subsections providing interactive information on what seniors can expect, types of resources available to support home needs, and choices to be made. Descriptions of types of settings for therapy, options available, and links to national/local resources (eg, quality indicators for SNFs) are also included. For example, by entering their zip code, users can identify their neighborhood SNFs, closest Area Agency on Aging, and what home caregiver agencies exist in their area.
Users can save their preferences and revisit their choices at any time. To support communication between seniors and their loved ones, a summary of their choices can be printed or e-mailed to relevant parties. For example, a senior uses PYL and can e-mail these choices to family members, which can stimulate a conversation about future posthospital care expectations.
As inadequate health literacy and cognitive impairment are prevalent among seniors, PYL presents information understandable at all levels of health literacy and sensitive to cognitive load.9 There is simplified, large-font, no mouse scrolling and audio available for the visually impaired.
Study Design and Randomization
To test PYL, a 2-armed (attention control [AC] and PYL intervention), parallel, randomized controlled trial was conducted. Participants were randomly assigned to 1 of the 2 conditions via a pregenerated central randomization list using equal (1:1) allocation and random permuted block design to ensure relatively equal allocation throughout the study. The AC condition exposed participants to the National Institute on Aging-sponsored website, Go4Life.nia.nih.gov, an educational website on physical activity for seniors. This website has comparable design and layout to PYL but does not include information about advanced planning. The AC condition controlled for the possibility that regular contact with the study team may improve outcomes in participants randomized to the intervention website.
The trial was conducted from October 2014 to September 2015 in Chicago, Illinois; Fort Wayne, Indiana; and Houston, Texas. Inclusion criteria were as follows: age 65 and older, English-speaking, scoring ≥4 questions correctly on the Brief Cognitive Screen,14 and current self-reported use of a computer or smartphone with internet. Participants were excluded if they had previously participated in the focus groups or beta testing of the PYL website. Community-based patient partners/stakeholders drove subject recruitment in their communities through word of mouth, e-mail bursts, newsletters, and flyers. At the Area Agency on Aging and community centers where services such as food vouchers and case management are provided, participants were recruited on-site and given study information. At the clinical sites, staff referred potential participants. Study materials such as flyers and information sheets were also located in the clinic waiting rooms. The Villages, nonprofit, grassroots, membership organizations that are redefining aging by being a key resource to community members wishing to age in place, heavily relied on electronic recruitment using their regular e-newsletters and e-mail lists to recruit potential participants. Potential subjects were also recruited by distributing flyers at local senior centers and senior housing buildings. Interested seniors contacted research staff who explained the study and assessed their eligibility. If eligible, subjects were scheduled for a face-to-face interview.
At the face-to-face encounter, all study subjects completed a written consent, answered baseline questions, and were randomized to either arm. Next, research staff introduced all study subjects to the website to which they were randomized and provided instructions on its use. Staff were present to assist with questions as needed on navigation but did not assist with decision making for either website. A minimum of 15 minutes and a maximum of 45 minutes was allotted for navigating either website. After navigating their website, participants were administered an immediate in-person posttest survey. One month and 3 months after the face-to-face encounter, research staff contacted all study participants over the phone to complete a follow-up survey. Staff attempted to reach participants up to 3 times by phone. Data were entered into Research Electronic Data Capture survey software.15 This study was approved by the Northwestern University Institutional Review Board.
Understanding of Posthospital Discharge and Home Services
As part of the larger trial, which included behavioural outcomes that will be reported elsewhere, we sought to explore the effects of PYL on participants’ knowledge and understanding of posthospital discharge and home services (UHS). Participants were asked to respond to 6 questions at baseline, immediate posttest, and at the 1- and 3-month follow-up time points. Knowledge items were developed by the study team in conjunction with the patient/partner stakeholders. UHS scores were calculated as the sum of the 6 questions (each scored 0 if incorrect and 1 if correct) with a possible range of 0-6.
Covariates
Demographic information, self-reported health, importance of religion, and existence of a power of attorney, living will, advanced directive (eg, Physician Orders for Life-Sustaining Treatment) were obtained via self-report. Participants were asked about their general and social self-efficacy using the validated Self-efficacy Scale16 and their social support using the Lubben Social Network Scale–6.17 Health literacy was assessed using the Rapid Estimate of Adult Literacy in Medicine–Short Form.18 To measure burden of disease, participant comorbidities were measured using a nonvalidated 9-item dichotomous response condition list, which included some items adapted from the Charlson Comorbidity Index and the Elixhauser Comorbidity Index.
Statistical Analysis
Data analysis included all available data in the intention-to-treat dataset. As UHS was collected at multiple time points up to 3 months postintervention, we employed linear- mixed modeling with random participant effect and fixed arm, time, and time-by-arm interaction terms. The time-by-arm interaction allows for comparison of UHS slopes (or trajectories) across arms. Analyses explored multiple potential covariates, including current utilization of services, physical function, comorbidities, social support, health literacy, self-efficacy, and sociodemographics. Those covariates found to have a significant association (P < 0.05) with outcome were considered for inclusion in the overall model selection process. Ultimately, we developed a final parsimonious, adjusted longitudinal model with primary predictors of time, arm, and their interaction, controlling for only significant baseline variables following a manual backward selection method. All analyses were conducted in SAS software (version 9.4, copyright 2012, The SAS Institute Inc., Cary, North Carolina).
RESULTS
Table 3 illustrates linear mixed model results both failing to adjust and adjusting for potentially influential baseline covariates. In both instances, the interaction term (arm-by-time) was highly significant (P < 0.0001) in predicting UHS score, suggesting that, when compared to the AC arm, the intervention arm exhibited a large mean slope in UHS score over time. That is, understanding home services score tended to increase at a faster rate for those in the active arm. Higher levels of income (P = 0.0191), literacy (P = 0.0036), and education (P = 0.0042) were associated with increased UHS scores; however, male sex (P = 0.0023) and history of high blood pressure (P = 0.0409) or kidney disease (P = 0.0278) were negatively associated with UHS scores.
CONCLUSION/DISCUSSION
The results of our study show that among seniors, PYL improved their understanding of home-based services and the services that may be required following a hospitalization. Educating seniors about what to expect regarding the transition home from a hospital before a hospitalization even occurs may enable seniors and their families to plan ahead instead of reacting to a hospitalization. PYL, a national, publicly available tool with links to local resources may potentially help in advancing transitional discharge care to prior to a hospitalization.
To our knowledge, this is one of the first websites and trials devoted to planning for seniors’ health trajectory as they age into their 70s, 80s, 90s, and 100s. Clinicians regularly discuss code status and powers of attorney during their end-of-life discussions with patients. We encourage clinicians to ask patients, “What about the 10 to 20 years before you die? Have you considered what you will do if you get sick or need help at home?” While not replacing a social worker, the ability of PYL to connect seniors to local resources makes it somewhat of a “virtual social worker.” With many physician practices unable to afford social workers, PYL provides a free-of-charge means of connecting seniors to area resources.
The study participants were in general white, educated, and in reasonably good health. This may be a limitation of this study given that it could impact the generalizability of the study results, as we are unable to know for certain if these same results would be observed with participants who have lower educational levels and are in poor health. Power considerations in this study did not account for comparison of outcomes within specific subgroups so we were unable to assess outcomes in groups such as those with limited health literacy, low social support, or low self-efficacy. The trial was also limited by our inability to collect information on whether or not the knowledge gains observed in the study led to any measureable outcomes. Due to the relatively short follow-up time, we were unable to ascertain whether any study participants were hospitalized during the study follow-up period and if so, if exposure to PYL had any impact on patient anxiety, length of hospital stay, and/or caregiver burden. We were also unable to assess patients’ ability to utilize and carry out their posthospitalization discharge plans if they had one in place. Future studies with longer follow-up are needed to determine these important, measurable outcomes.
Potential implications of planning for a senior’s lifespan are expansive. If hospitalized seniors knew their preferred SNF for subacute rehabilitation on the first day of their hospitalization, hospital lengths of stay could potentially be reduced. If families knew which caregiver agencies, Area Agency on Aging, or Village their senior wished to use, obtaining services would perhaps be easier to accomplish.
Acknowledgments
This work was supported through a Patient-Centered Outcomes Research Institute Award (IH-12-11-4259). Dr. Lindquist and Dr. Ciolino had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. Research reported in this publication was also supported, in part, by the National Institutes of Health’s National Center for Advancing Translational Sciences, Grant Number UL1TR000150.
Disclaimer
All statements in this manuscript, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute, its Board of Governors or Methodology Committee, or the National Institutes of Health.
Disclosure: The authors have nothing to report.
1. Campbell SE, Seymour DG, Primrose WR, ACMEPLUS Project. A systematic literature review of factors affecting outcome in older medical patients admitted to hospital. Age Ageing. 2004;33:110-115. PubMed
2. Forster AJ, Clark HD, Menard A, et al. Adverse events among medical patients after discharge from hospital. CMAJ. 2004; 70:345-349. PubMed
3. Kane RL Finding the right level of posthospital care: “We didn’t realize there was any other option for him”. JAMA. 2011;305(3):284-293. PubMed
4. Shepperd S, McClaran J, Phillips CO, et al. Discharge planning from hospital to home. Cochrane Database Syst Rev. 2010;(1):CD000313. PubMed
5. Horwitz LI, Moriarty JP, Chen C, et al. Quality of discharge practices and patient understanding at an academic medical center. JAMA Intern Med. 2013;173:1715-1722. PubMed
6. Creditor MC. Hazards of hospitalization of the elderly. Ann Intern Med. 1993;118(3):219-223. PubMed
7. U.S. Census Bureau, Population Division, Census 2003. https://www.census.gov/programs-surveys/saipe/data/datasets.2003.html. Originally accessed September 1, 2016.
8. Russo, C. A., Elixhauser, A. Hospitalizations in the Elderly Population, 2003. Statistical Brief #6. May 2006. Agency for Healthcare Research and Quality, Rockville, MD. http://www.hcup-us.ahrq.gov/reports/statbriefs/sb6.pdf. Accessed September 1, 2017.
9 U.S. Department of Health and Human Services, and U.S. Department of Labor. The future supply of long-term care workers in relation to the aging baby boom generation: Report to Congress. Washington, DC: Office of the Assistant Secretary for Planning and Evaluation, 2003. http:aspe.hhs.gov/daltcp/reports/ltcwork.htm. Accessed September 1, 2016.
10. The Henry J. Kaiser Foundation. Long-term Care: Medicaid’s role and challenges [Publication #2172]. Washington, DC: 1999.
11. AARP. Beyond 50.2003: A Report to the Nation on Independent Living and Disability, 2003, http://www.aarp.org/research/health/disabilities/aresearch-import-753.html. Accessed September 1, 2016.
12. Lindquist LA, Ramirez-Zohfeld V, Sunkara P, et al. Advanced Life Events (ALEs) that Impede Aging-in-Place among Seniors. Arch Gerontol Geriatrs. 2016;64:90-95. PubMed
13. Doak CC, Doak LG, Root JH. Teaching Patients with Low Literacy Skills. Philadelphia, PA: JB Lippincott Co.; 1996.
14. Callahan CM, Unverzagt FW, Hui SL, Perkins AJ, Hendrie HC. Six-item screener to identify cognitive impairment among potential subjects for clinical research. Med Care. 2002;40:771-781. PubMed
15. Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Gonzalez J, Conde JG. Research electronic data capture (REDCap) - A metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42(2):377-381. PubMed
16. Sherer M, Maddux JE, Mercandante B, Prentice-Dunn S, Jacobs B, Rogers RW. The Self Efficacy Scale: Construction and Validation. Psychol Rep. 1982;51(3):663-671.
17. Lubben JE. Assessing social networks among elderly populations. Fam Community Health. 1988;11(3):42-52.
18. Arozullah AM, Yarnold PR, Bennett CL, et al. Development and validation of the Rapid Estimate of Adult Literacy in Medicine. Medical Care. 2007;45(11):1026-1033. PubMed
1. Campbell SE, Seymour DG, Primrose WR, ACMEPLUS Project. A systematic literature review of factors affecting outcome in older medical patients admitted to hospital. Age Ageing. 2004;33:110-115. PubMed
2. Forster AJ, Clark HD, Menard A, et al. Adverse events among medical patients after discharge from hospital. CMAJ. 2004; 70:345-349. PubMed
3. Kane RL Finding the right level of posthospital care: “We didn’t realize there was any other option for him”. JAMA. 2011;305(3):284-293. PubMed
4. Shepperd S, McClaran J, Phillips CO, et al. Discharge planning from hospital to home. Cochrane Database Syst Rev. 2010;(1):CD000313. PubMed
5. Horwitz LI, Moriarty JP, Chen C, et al. Quality of discharge practices and patient understanding at an academic medical center. JAMA Intern Med. 2013;173:1715-1722. PubMed
6. Creditor MC. Hazards of hospitalization of the elderly. Ann Intern Med. 1993;118(3):219-223. PubMed
7. U.S. Census Bureau, Population Division, Census 2003. https://www.census.gov/programs-surveys/saipe/data/datasets.2003.html. Originally accessed September 1, 2016.
8. Russo, C. A., Elixhauser, A. Hospitalizations in the Elderly Population, 2003. Statistical Brief #6. May 2006. Agency for Healthcare Research and Quality, Rockville, MD. http://www.hcup-us.ahrq.gov/reports/statbriefs/sb6.pdf. Accessed September 1, 2017.
9 U.S. Department of Health and Human Services, and U.S. Department of Labor. The future supply of long-term care workers in relation to the aging baby boom generation: Report to Congress. Washington, DC: Office of the Assistant Secretary for Planning and Evaluation, 2003. http:aspe.hhs.gov/daltcp/reports/ltcwork.htm. Accessed September 1, 2016.
10. The Henry J. Kaiser Foundation. Long-term Care: Medicaid’s role and challenges [Publication #2172]. Washington, DC: 1999.
11. AARP. Beyond 50.2003: A Report to the Nation on Independent Living and Disability, 2003, http://www.aarp.org/research/health/disabilities/aresearch-import-753.html. Accessed September 1, 2016.
12. Lindquist LA, Ramirez-Zohfeld V, Sunkara P, et al. Advanced Life Events (ALEs) that Impede Aging-in-Place among Seniors. Arch Gerontol Geriatrs. 2016;64:90-95. PubMed
13. Doak CC, Doak LG, Root JH. Teaching Patients with Low Literacy Skills. Philadelphia, PA: JB Lippincott Co.; 1996.
14. Callahan CM, Unverzagt FW, Hui SL, Perkins AJ, Hendrie HC. Six-item screener to identify cognitive impairment among potential subjects for clinical research. Med Care. 2002;40:771-781. PubMed
15. Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Gonzalez J, Conde JG. Research electronic data capture (REDCap) - A metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42(2):377-381. PubMed
16. Sherer M, Maddux JE, Mercandante B, Prentice-Dunn S, Jacobs B, Rogers RW. The Self Efficacy Scale: Construction and Validation. Psychol Rep. 1982;51(3):663-671.
17. Lubben JE. Assessing social networks among elderly populations. Fam Community Health. 1988;11(3):42-52.
18. Arozullah AM, Yarnold PR, Bennett CL, et al. Development and validation of the Rapid Estimate of Adult Literacy in Medicine. Medical Care. 2007;45(11):1026-1033. PubMed
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