Lifestyle Changes and Pressure Ulcer Prevention in Adults With Spinal Cord Injury in the Pressure Ulcer Prevention Study Lifestyle Intervention Samruddhi Ghaisas, Elizabeth A. Pyatak, Erna Blanche, Jeanine Blanchard, Florence Clark; PUPS II Study Group
MeSH Terms life style pressure ulcer risk reduction behavior spinal cord injuries tertiary prevention
Pressure ulcers (PrUs) are a major burden to patients with spinal cord injury (SCI), affecting their psychological, physical, and social well-being. Lifestyle choices are thought to contribute to the risk of developing PrUs. This article focuses on the interaction between lifestyle choices and the development of PrUs in community settings among participants in the University of Southern California–Rancho Los Amigos National Rehabilitation Center Pressure Ulcer Prevention Study (PUPS II), a randomized controlled trial of a lifestyle intervention for adults with SCI. We conducted a secondary cross-case analysis of treatment notes of 47 PUPS II participants and identified four patterns relating PrU development to lifestyle changes: positive PrU changes (e.g., healing PrUs) with positive lifestyle changes, negative or no PrU changes with positive lifestyle changes, positive PrU changes with minor lifestyle changes, and negative or no PrU changes with no lifestyle changes. We present case studies exemplifying each pattern. Ghaisas, S., Pyatak, E. A., Blanche, E., Blanchard, J., Clark, F.; PUPS II Study Group. (2015). Lifestyle changes and pressure ulcer prevention in adults with spinal cord injury in the Pressure Ulcer Prevention Study lifestyle intervention. American Journal of Occupational Therapy, 69, 6901290020. http://dx.doi.org/10.5014/ajot.2015.012021
Samruddhi Ghaisas, OTD, OTR/L, is Director of Rehabilitation, Alhambra Healthcare and Wellness Center, Alhambra, CA. When this article was written, she was Occupational Therapy Doctorate Resident, Mrs. T. H. Chan Division of Occupational Science and Occupational Therapy, University of Southern California, Los Angeles. Elizabeth A. Pyatak, PhD, OTR/L, is Assistant Professor, Mrs. T. H. Chan Division of Occupational Science and Occupational Therapy, University of Southern California, Los Angeles. Erna Blanche, PhD, OTR/L, FAOTA, is Associate Professor of Clinical Occupational Therapy, Mrs. T. H. Chan Division of Occupational Science and Occupational Therapy, University of Southern California, Los Angeles. Jeanine Blanchard, PhD, OTR/L, is Project Coordinator, Mrs. T. H. Chan Division of Occupational Science and Occupational Therapy, University of Southern California, Los Angeles; [email protected] Florence Clark, PhD, OTR/L, FAOTA, is Professor and Associate Dean and Chair, Mrs. T. H. Chan Division of Occupational Science and Occupational Therapy, University of Southern California, Los Angeles.
The American Journal of Occupational Therapy
S
erious (Stages 3 and 4 of four stages) pressure ulcers (PrUs) are a common and potentially life-threatening complication of spinal cord injuries (SCIs; Garber, Rintala, Holmes, Rodriguez, & Friedman, 2002). PrUs can become a psychological, physical, and social burden to patients, affecting their health, well-being, and quality of life (Gorecki et al., 2009). A PrU is an area of skin tissue damage caused by pressure, or pressure in combination with shear, and the resultant disruption of blood supply (National Pressure Ulcer Advisory Panel and European Ulcer Advisory Panel, 2009). Risk factors for PrU development among people with SCI include older age, severity and level of SCI, degree of impairment, comorbid health conditions, poor hygiene, stress, and substance abuse (Byrne & Salzberg, 1996; Chen, Devivo, & Jackson, 2005; Garber, Rintala, Rossi, Hart, & Fuhrer, 1996). Additionally, the lack of patient education regarding prevention of PrUs contributes to the recurrence of PrUs among people with SCI (Garber et al., 1996). In addition to negative consequences to health and quality of life, PrUs are associated with increased health care costs, with one study demonstrating a 3.6-fold increase in expenditures for community-dwelling people with SCI who experienced a PrU versus those who were PrU-free (Stroupe et al., 2011). Cost-effective community interventions are clearly needed to prevent PrUs among people with SCI (Byrne & Salzberg, 1996; Garber & Rintala, 2003; Garber, Rintala, Hart, & Fuhrer, 2000). In response to the need for efficacious community-based interventions addressing PrU prevention, Clark and colleagues (2006) conducted a 2-yr qualitative study investigating lifestyle factors contributing to the formation of PrUs in adults with SCI. Findings from this study, the Pressure Ulcer Prevention Study I 6901290020p1
(PUPS I), suggested that the prevention of PrUs in adults with SCI may be related to everyday lifestyle choices and daily routines (Clark et al., 2006; Dunn, Carlson, Jackson, & Clark, 2009; Fogelberg, Atkins, Blanche, Carlson, & Clark, 2009). The risks encountered by this population are complex, multilayered, and individualized. The investigative team identified eight lifestyle principles that partially explained PrU risk in adults with SCI, including disruption of routine, decay of preventive behaviors, limited access to care, and inadequacy of equipment, and recommended that these principles be incorporated into a lifestylebased intervention (Jackson et al., 2010). Additionally, the team identified response patterns to the initial detection of a low-grade PrU, many of which, such as procrastinating and avoiding social discomfort, could delay seeking treatment and increase the risk of worsening the PrU (Dunn et al., 2009). Clark and colleagues (2007) developed a manualized community-based lifestyle intervention, the Pressure Ulcer Prevention Program (PUPP), to address the lifestyle concerns identified in PUPS I. The PUPP intervention is aimed at reducing the incidence of serious PrUs and associated surgeries, reducing medical expenses, and enhancing quality of life among community-dwelling adults with SCI (Vaishampayan, Clark, Carlson, & Blanche, 2011). The efficacy and cost-effectiveness of PUPP are presently being evaluated in a randomized controlled trial, Lifestyle Redesign for Pressure Ulcer Prevention in Spinal Cord Injury (PUPS II), in which a total of 170 participants were randomized into either a control group receiving usual care or an experimental group receiving the PUPP intervention. The PUPP intervention spans 1 yr, divided into an intensive phase (Months 0–6), which incorporates weekly in-person and telephone intervention sessions, and a tapered phase (Months 7–12), which includes biweekly telephone sessions and two in-person visits. In addition to taking part in preplanned sessions, participants are instructed to contact their occupational therapist for immediate assistance if they detect a new PrU or experience an unanticipated event that heightens PrU risk. Delivery of the PUPP intervention is guided by a manual that incorporates both fixed and variable topics, organized into six modules: (1) Understanding Lifestyle and PrU Risk, (2) Advocacy, (3) Equipment and the Physical Environment, (4) Social Support, (5) Happiness and Personal Well-Being, and (6) Planning the Future (Blanche, Fogelberg, Diaz, Carlson, & Clark, 2011). The intervention is individually tailored by applying the variable topics in accordance with a participant’s individualized goals for reducing PrU risk. The PUPP intervention manual incorporates eight overarching principles, which, regardless of the individualized 6901290020p2
goal addressed, are adhered to throughout the intervention (Jackson et al., 2010). For example, the principle of lifestyle trade-off states that PrU management strategies (e.g., prolonged bedrest) are sometimes in conflict with personally meaningful activities (e.g., attendance at a family function). In such cases, the benefits of engaging in the desired activity must be carefully weighed against the potential for PrU worsening. The purpose of this article is to explore the relationship between lifestyle changes made within the context of the PUPP intervention and the development and progression of PrUs. Through the use of case studies, this article examines participants’ life histories and life choices as factors interrelated with PrU development, giving particular attention to PrU progression in real-life contexts.
Method Research Design We investigated the relationship between changes in lifestyle and changes in PrU status through a secondary analysis of intervention recipients’ treatment notes recorded by occupational therapist and nurse interveners. This analysis was conducted as part of the PUPS II study, in which 170 participants were randomized to either the 12-mo PUPP intervention (n 5 83) or a usual-care control group (n 5 87). The participants selected for this secondary analysis included all participants in the intervention group who had completed the 12-mo intervention phase as of December 2011 (n 5 47). This study was approved by the Los Amigos Research and Education Institute and University of Southern California institutional review boards, and all participants completed informed consent before enrollment. Participants Participants in the PUPS II study were English- or Spanishspeaking adults with SCI and a history of serious PrUs. They were recruited from Rancho Los Amigos National Rehabilitation Center (RLANRC), a county facility serving primarily urban, low-income patients. Bilingual recruiters attended the RLANRC PrU management clinic each week to enroll interested patients and visited the PrU management inpatient unit to discuss the study with prospective participants before discharge. Recruitment posters were also placed in strategic locations throughout the RLANRC campus. Procedures and Data Collection The primary data used for this retrospective secondary analysis were treatment notes of the 47 selected intervention group participants. Participants’ treatment January/February 2015, Volume 69, Number 1
notes were recorded by licensed occupational therapists and registered nurses administering the intervention. Notes were entered in an electronic database and contained participants’ background information, individual session notes, discharge summaries, and information on unusual events that may have occurred during the intervention. In total, 1,922 documents were reviewed, including an average of 40.9 notes per participant (range: 4–70). The data available for each participant included a mean of 33.4 occupational therapy treatment notes, 2.5 nursing treatment notes, 3 incident notes, 1 health history, and 1 discharge summary. Data Analysis Data analysis followed a four-step process. First, the first author (Ghaisas) read all the intervention notes and identified the need to classify participants on the basis of the relationship between their lifestyle changes and PrU status. Second, she organized data from 9 participants into provisional case studies to explore the relationship between lifestyle changes and PrUs. Four key patterns emerged from this process, which were reviewed with the occupational therapy interveners and members of the research team for confirmation. Third, to validate these patterns, the first author reread the treatment notes for all participants who had completed the intervention phase by December 2011 (n 5 47) and, using demographic and qualitative data, categorized them into the previously identified patterns. To accomplish this analytic process, she created data tables that included each participant’s level of SCI, number of years since injury, history of PrUs during and before the study period, positive and negative factors associated with the participant’s background, progress made healing PrUs during intervention, and a summary of lifestyle changes implemented during intervention. Finally, the interveners and three members of the research team reviewed the data tables, confirmed the categories assigned to all 47 participants, and selected exemplary cases that best represented the four identified patterns between lifestyle changes and formation of PrUs.
Results In total, 47 cases were reviewed for this article, representing all PUPS II participants who had completed the PUPP intervention phase by December 2011. Of the 47 cases, 17 experienced no PrUs during the intervention and therefore were excluded from the analysis. Two participants had very poor adherence (
MeSH Terms life style pressure ulcer risk reduction behavior spinal cord injuries tertiary prevention
Pressure ulcers (PrUs) are a major burden to patients with spinal cord injury (SCI), affecting their psychological, physical, and social well-being. Lifestyle choices are thought to contribute to the risk of developing PrUs. This article focuses on the interaction between lifestyle choices and the development of PrUs in community settings among participants in the University of Southern California–Rancho Los Amigos National Rehabilitation Center Pressure Ulcer Prevention Study (PUPS II), a randomized controlled trial of a lifestyle intervention for adults with SCI. We conducted a secondary cross-case analysis of treatment notes of 47 PUPS II participants and identified four patterns relating PrU development to lifestyle changes: positive PrU changes (e.g., healing PrUs) with positive lifestyle changes, negative or no PrU changes with positive lifestyle changes, positive PrU changes with minor lifestyle changes, and negative or no PrU changes with no lifestyle changes. We present case studies exemplifying each pattern. Ghaisas, S., Pyatak, E. A., Blanche, E., Blanchard, J., Clark, F.; PUPS II Study Group. (2015). Lifestyle changes and pressure ulcer prevention in adults with spinal cord injury in the Pressure Ulcer Prevention Study lifestyle intervention. American Journal of Occupational Therapy, 69, 6901290020. http://dx.doi.org/10.5014/ajot.2015.012021
Samruddhi Ghaisas, OTD, OTR/L, is Director of Rehabilitation, Alhambra Healthcare and Wellness Center, Alhambra, CA. When this article was written, she was Occupational Therapy Doctorate Resident, Mrs. T. H. Chan Division of Occupational Science and Occupational Therapy, University of Southern California, Los Angeles. Elizabeth A. Pyatak, PhD, OTR/L, is Assistant Professor, Mrs. T. H. Chan Division of Occupational Science and Occupational Therapy, University of Southern California, Los Angeles. Erna Blanche, PhD, OTR/L, FAOTA, is Associate Professor of Clinical Occupational Therapy, Mrs. T. H. Chan Division of Occupational Science and Occupational Therapy, University of Southern California, Los Angeles. Jeanine Blanchard, PhD, OTR/L, is Project Coordinator, Mrs. T. H. Chan Division of Occupational Science and Occupational Therapy, University of Southern California, Los Angeles; [email protected] Florence Clark, PhD, OTR/L, FAOTA, is Professor and Associate Dean and Chair, Mrs. T. H. Chan Division of Occupational Science and Occupational Therapy, University of Southern California, Los Angeles.
The American Journal of Occupational Therapy
S
erious (Stages 3 and 4 of four stages) pressure ulcers (PrUs) are a common and potentially life-threatening complication of spinal cord injuries (SCIs; Garber, Rintala, Holmes, Rodriguez, & Friedman, 2002). PrUs can become a psychological, physical, and social burden to patients, affecting their health, well-being, and quality of life (Gorecki et al., 2009). A PrU is an area of skin tissue damage caused by pressure, or pressure in combination with shear, and the resultant disruption of blood supply (National Pressure Ulcer Advisory Panel and European Ulcer Advisory Panel, 2009). Risk factors for PrU development among people with SCI include older age, severity and level of SCI, degree of impairment, comorbid health conditions, poor hygiene, stress, and substance abuse (Byrne & Salzberg, 1996; Chen, Devivo, & Jackson, 2005; Garber, Rintala, Rossi, Hart, & Fuhrer, 1996). Additionally, the lack of patient education regarding prevention of PrUs contributes to the recurrence of PrUs among people with SCI (Garber et al., 1996). In addition to negative consequences to health and quality of life, PrUs are associated with increased health care costs, with one study demonstrating a 3.6-fold increase in expenditures for community-dwelling people with SCI who experienced a PrU versus those who were PrU-free (Stroupe et al., 2011). Cost-effective community interventions are clearly needed to prevent PrUs among people with SCI (Byrne & Salzberg, 1996; Garber & Rintala, 2003; Garber, Rintala, Hart, & Fuhrer, 2000). In response to the need for efficacious community-based interventions addressing PrU prevention, Clark and colleagues (2006) conducted a 2-yr qualitative study investigating lifestyle factors contributing to the formation of PrUs in adults with SCI. Findings from this study, the Pressure Ulcer Prevention Study I 6901290020p1
(PUPS I), suggested that the prevention of PrUs in adults with SCI may be related to everyday lifestyle choices and daily routines (Clark et al., 2006; Dunn, Carlson, Jackson, & Clark, 2009; Fogelberg, Atkins, Blanche, Carlson, & Clark, 2009). The risks encountered by this population are complex, multilayered, and individualized. The investigative team identified eight lifestyle principles that partially explained PrU risk in adults with SCI, including disruption of routine, decay of preventive behaviors, limited access to care, and inadequacy of equipment, and recommended that these principles be incorporated into a lifestylebased intervention (Jackson et al., 2010). Additionally, the team identified response patterns to the initial detection of a low-grade PrU, many of which, such as procrastinating and avoiding social discomfort, could delay seeking treatment and increase the risk of worsening the PrU (Dunn et al., 2009). Clark and colleagues (2007) developed a manualized community-based lifestyle intervention, the Pressure Ulcer Prevention Program (PUPP), to address the lifestyle concerns identified in PUPS I. The PUPP intervention is aimed at reducing the incidence of serious PrUs and associated surgeries, reducing medical expenses, and enhancing quality of life among community-dwelling adults with SCI (Vaishampayan, Clark, Carlson, & Blanche, 2011). The efficacy and cost-effectiveness of PUPP are presently being evaluated in a randomized controlled trial, Lifestyle Redesign for Pressure Ulcer Prevention in Spinal Cord Injury (PUPS II), in which a total of 170 participants were randomized into either a control group receiving usual care or an experimental group receiving the PUPP intervention. The PUPP intervention spans 1 yr, divided into an intensive phase (Months 0–6), which incorporates weekly in-person and telephone intervention sessions, and a tapered phase (Months 7–12), which includes biweekly telephone sessions and two in-person visits. In addition to taking part in preplanned sessions, participants are instructed to contact their occupational therapist for immediate assistance if they detect a new PrU or experience an unanticipated event that heightens PrU risk. Delivery of the PUPP intervention is guided by a manual that incorporates both fixed and variable topics, organized into six modules: (1) Understanding Lifestyle and PrU Risk, (2) Advocacy, (3) Equipment and the Physical Environment, (4) Social Support, (5) Happiness and Personal Well-Being, and (6) Planning the Future (Blanche, Fogelberg, Diaz, Carlson, & Clark, 2011). The intervention is individually tailored by applying the variable topics in accordance with a participant’s individualized goals for reducing PrU risk. The PUPP intervention manual incorporates eight overarching principles, which, regardless of the individualized 6901290020p2
goal addressed, are adhered to throughout the intervention (Jackson et al., 2010). For example, the principle of lifestyle trade-off states that PrU management strategies (e.g., prolonged bedrest) are sometimes in conflict with personally meaningful activities (e.g., attendance at a family function). In such cases, the benefits of engaging in the desired activity must be carefully weighed against the potential for PrU worsening. The purpose of this article is to explore the relationship between lifestyle changes made within the context of the PUPP intervention and the development and progression of PrUs. Through the use of case studies, this article examines participants’ life histories and life choices as factors interrelated with PrU development, giving particular attention to PrU progression in real-life contexts.
Method Research Design We investigated the relationship between changes in lifestyle and changes in PrU status through a secondary analysis of intervention recipients’ treatment notes recorded by occupational therapist and nurse interveners. This analysis was conducted as part of the PUPS II study, in which 170 participants were randomized to either the 12-mo PUPP intervention (n 5 83) or a usual-care control group (n 5 87). The participants selected for this secondary analysis included all participants in the intervention group who had completed the 12-mo intervention phase as of December 2011 (n 5 47). This study was approved by the Los Amigos Research and Education Institute and University of Southern California institutional review boards, and all participants completed informed consent before enrollment. Participants Participants in the PUPS II study were English- or Spanishspeaking adults with SCI and a history of serious PrUs. They were recruited from Rancho Los Amigos National Rehabilitation Center (RLANRC), a county facility serving primarily urban, low-income patients. Bilingual recruiters attended the RLANRC PrU management clinic each week to enroll interested patients and visited the PrU management inpatient unit to discuss the study with prospective participants before discharge. Recruitment posters were also placed in strategic locations throughout the RLANRC campus. Procedures and Data Collection The primary data used for this retrospective secondary analysis were treatment notes of the 47 selected intervention group participants. Participants’ treatment January/February 2015, Volume 69, Number 1
notes were recorded by licensed occupational therapists and registered nurses administering the intervention. Notes were entered in an electronic database and contained participants’ background information, individual session notes, discharge summaries, and information on unusual events that may have occurred during the intervention. In total, 1,922 documents were reviewed, including an average of 40.9 notes per participant (range: 4–70). The data available for each participant included a mean of 33.4 occupational therapy treatment notes, 2.5 nursing treatment notes, 3 incident notes, 1 health history, and 1 discharge summary. Data Analysis Data analysis followed a four-step process. First, the first author (Ghaisas) read all the intervention notes and identified the need to classify participants on the basis of the relationship between their lifestyle changes and PrU status. Second, she organized data from 9 participants into provisional case studies to explore the relationship between lifestyle changes and PrUs. Four key patterns emerged from this process, which were reviewed with the occupational therapy interveners and members of the research team for confirmation. Third, to validate these patterns, the first author reread the treatment notes for all participants who had completed the intervention phase by December 2011 (n 5 47) and, using demographic and qualitative data, categorized them into the previously identified patterns. To accomplish this analytic process, she created data tables that included each participant’s level of SCI, number of years since injury, history of PrUs during and before the study period, positive and negative factors associated with the participant’s background, progress made healing PrUs during intervention, and a summary of lifestyle changes implemented during intervention. Finally, the interveners and three members of the research team reviewed the data tables, confirmed the categories assigned to all 47 participants, and selected exemplary cases that best represented the four identified patterns between lifestyle changes and formation of PrUs.
Results In total, 47 cases were reviewed for this article, representing all PUPS II participants who had completed the PUPP intervention phase by December 2011. Of the 47 cases, 17 experienced no PrUs during the intervention and therefore were excluded from the analysis. Two participants had very poor adherence (
