Community-dwelling adults who participated in a chronic disease self-management, disability prevention intervention for one year improved their health and reduced their disability risk factors. Specifically, fewer participants were depressed, physically inactive, and/or at nutritional risk after one year of program participation. The number of depressive symptoms declined, the level of physical activity and exercise readiness improved, and nutritional risk diminished for participants who screened positive for these risk factors at enrollment. Self-perceived health improved, fewer reported any days of restricted activity, and hospitalization did not increase during the year of program participation.
The findings from this five-state dissemination of HEP mirror those from the randomized (efficacy) trial (Leveille et al 1998
) in some respects and those from the local dissemination (effectiveness) (Phelan, Williams, Leveille, et al 2002
) in other respects. Improvement in three disability risk factors varied among the present and previous dissemination and the randomized trial. Physical activity and exercise readiness (PACE scores) improved significantly in all three studies. Depression improved significantly in both the five-state and the local dissemination, but not in the randomized trial. Nutritional risk improved significantly in the five-state dissemination, but not in either the local dissemination or randomized trial. Perceived health improved in all three studies, significantly only in the local dissemination, marginally in the five-state dissemination, and non-significantly in the randomized trial. Functional decline was prevented or reduced in all three studies, although the bed days measure was significant only in the randomized trial and the restricted activity days measure was marginally significant only in the two dissemination studies. Finally, the percentage of HEP participants hospitalized declined significantly in the efficacy trial (from 21% in the baseline year to 13% at follow-up) but was unchanged in the two dissemination studies. As described previously (Phelan, Williams, Leveille, et al 2002
), differing methods have been used over time to ascertain hospitalizations (administrative data for the efficacy trial versus self-report for the present and the local dissemination, the latter of which has been shown by others [Roberts et al 1996
; Wallihan et al 1999
] to have limited reliability), and thus the present results regarding hospitalizations should be interpreted cautiously.
Two papers describe a program very similar to HEP, called Health Matters, implemented by a California long-term care insurance company in consultation with original HEP staff (Holland et al 2003
; Tidwell et al 2004
). A comparison of the Health Matters program and HEP has been published previously (Leveille et al 2004
). Similar programs are being tested in other locales with somewhat different populations (Hughes SL and Boult C, personal communication), and SSSKC is currently in negotiations with Carle Hospital Foundation to include HEP as part of a Medicare demonstration project. These developments all indicate HEP’s robust potential for obtaining, for example, capitated funding from Medicare, similar to the Program of All-Inclusive Care for the Elderly for frail elders meeting nursing home certifiability criteria (Gross et al 2004
), or contracts with healthcare insurers whose older members enroll in HEP.
Limitations of the present evaluation include its before–after design, which means that observed results may not be due to the HEP intervention. The other major limitation is that, of 224 participants enrolled, only 115 (51%) completed a 12-month follow-up questionnaire, and thus there was power to detect only large changes on our health and functional outcomes of interest. Such low participation is not unusual for senior center programs in general and is more likely with programs such as HEP, wherein a follow-up questionnaire is requested and no incentive is offered. We observed a similarly high non-completion rate in the local dissemination, which may bias our results. However, our comparison of those who did and did not complete the 12-month questionnaire showed that these groups differed in such a way that effects might have been greater than those observed had the non-completers actually participated in the 12-month follow-up. That is, HEP participants who did not complete the 12-month questionnaire had more ADL difficulty, more mobility difficulty, and greater severity of two of the three disability risk factors at time of enrollment in the program. Based on these differences, one would predict that non-completers would have benefited more than completers had they continued with the intervention, which may have led to greater mean improvement.
In light of the difficulty encountered with retaining participants for one year, and data from the local dissemination suggesting that, among who experience improvement in their disability risk factors, most improvement occurs in the first six months (Phelan, Williams, Wagner, et al 2002
), it was decided to change the duration of the program to six, rather than twelve months, with an option for participants to extend for a full twelve months if they desire. This change has been in effect since 2004.
In spite of bias due to dropout, several strengths merit mention. First, the program continued to reach its target population (older adults with chronic conditions at risk for functional decline). Second, the five state dissemination attracted participants who were more diverse than those in the local dissemination (25% vs 11.5% nonwhite, respectively) from a variety of community centers in urban and rural regions of the US. Third, the five state dissemination achieved this enrollment through the cooperative efforts of newly created community-based networks of social service providers, academics, primary care providers, and healthcare systems. It is important to note that participants reported on herein were not recruited to participate in a study, nor was the program delivered in a controlled study environment. Rather, because this was an evaluation of the effectiveness of a program whose efficacy had been previously established, findings are indicative of outcomes achievable under real world conditions. Fourth, the use of an internet-based data collection and tracking system (WellWare©) permitted identification of variations in process or outcomes across the different sites that could be addressed as part of ongoing programmatic quality improvement.
What are the broader implications of the present evaluation? Several issues must be addressed for the HEP program to continue to expand. First, small caseloads were observed in several sites. This phenomenon was likely due to the fact that HEP staff were responsible for developing their own referral base. Though a strong referral base is absolutely essential to ensure adequate program reach, the development of such referral bases needs to be the responsibility of the program administration rather than HEP staff. Second, a great deal of time and effort was expended in order to enroll people of color and refugee/immigrant populations. Many potential participants were found to be in a pre-contemplative stage of readiness for change in health-related behavior, focused on more immediately pressing issues such as economic survival. While such individuals do appear to benefit from HEP participation, they are unlikely to enroll without a physician’s encouragement. Therefore, referrals from healthcare providers working in the local community where HEP is offered are essential to ensure program sustainability, and proactive efforts to increase provider awareness of HEP need to be undertaken at the program’s organizational level. Finally, several sites had a lengthy start-up period. Analysis of this issue by SSSKC revealed that some sites were not ready to implement HEP. SSSKC has now adopted a business plan for further dissemination of HEP that includes a structured marketing and referral strategy. SSSKC has also partnered with the National Council on Aging to develop a site-readiness assessment instrument that will permit them to determine whether sites with an interest in offering HEP are ready to do so.
In conclusion, the HEP continues to operate and expand under real world conditions, reaching elders at risk for functional decline. Participants who complete one year have a decreased burden of disability risk factors and avoid worsening of health or functional status and increase in hospitalization. Previous research indicates that under certain conditions, HEP also improves participants’ perceived health and function.