Preferences for rehabilitation services among women with major limb amputations

Transcription

1 CURRENT ISSUES Preferences for rehabilitation services among women with major limb amputations Christine A. Elnitsky 1,2,3, PhD RN, Gail A. Latlief 2,4,5, DO, Erin E. Andrews 6,7, PsyD, Laurel B. Adams-Koss 8, MOT, OTR/L & Samuel L. Phillips 1,2, PhD, CP 1 Research & Development Service, James A. Haley Veterans Hospital, Tampa, Florida, USA 2 HSR&D/RR&D Center of Excellence in Maximizing Rehabilitation Outcomes, Tampa, Florida, USA 3 College of Nursing, University of South Florida, Tampa, Florida, USA 4 Regional Amputation Center, Physical Medicine & Rehabilitation Service, James A. Haley Veterans Hospital, Tampa, Florida, USA 5 College of Medicine, University of South Florida, Tampa, Florida, USA 6 Central Texas VA Health Care System, Temple, Texas, USA 7 Department of Psychiatry & Behavioral Science, Texas A&M Health Science Center, College of Medicine, College Station, Texas, USA 8 VISN 8 Patient Safety Center, Tampa, Florida, USA Keywords Female; amputation; rehabilitation; patient preference; prostheses and implants. Correspondence Christine Elnitsky, PhD, Research & Development Service, James A. Haley Veterans Hospital, 8900 Grand Oak Circle, Tampa, FL [email protected] Accepted August 10, doi: /rnj.62 Abstract Purpose: We present five cases of adult females with major limb amputations, their concerns and preferences for services across the life span. Design: A convenience sample of five veteran and nonveteran women aged with major limb amputations participating in a regional VA Prosthetics Conference in 2010 took part in a panel interview. Findings: The concerns identified by these women as high priorities included independence and participation in a full range of life activities, limitations in access, patient decision-making and body image concerns, and preferences for selected services. Maximizing function and quality of life for women amputees requires identifying patient preferences for rehabilitation and prosthetic services. Lessons learned could inform development of clinic-based rehabilitation care, prosthetic services, and studies of women with major limb amputations. Conclusions: As the current conflicts in Iraq and Afghanistan wind down, the number of women veterans seeking rehabilitation and prosthetic services will increase. With this information, rehabilitation and prosthetic service providers and organizations will be uniquely positioned to provide prevention and treatment of amputations for this growing population of women veterans in national care delivery systems and in communities. Clinical Relevance: An open-ended facilitated discussion among a panel of women with major limb amputations provided insights for providers and organizations with respect to needs, concerns, and preferences for rehabilitation and prosthetic services. Background and Significance In 2008, the U.S. Department of Veterans Affairs implemented an integrated, multidisciplinary Amputation System of Care to meet the increased demand for specialized amputation rehabilitation and prosthetic care (Eckrich & Poorman, 2009; House Committee on Veterans Affairs, 2010; Sigford, 2010; United States Congress, 2006a,b). Rehabilitation and prosthetics healthcare provider continuing education is offered at annual prosthetics conferences. Participants in a 32

2 C. A. Elnitsky et al. Preferences of women amputees regional 2010 conference included a panel of five women veteran patients and research subjects seen at a local VA in the southeastern United States. We present five cases extending across the life span of veteran and nonveteran women with major limb amputations, aged 19 58, their concerns and preferences for rehabilitation, and prosthetic services. Current knowledge of gender-based preferences for rehabilitation and prosthetic services and the impact on outcomes is limited. While the research literature has begun to address gender differences in rehabilitation of adults with major limb amputations, studies are generally focused on successful limb fitting at discharge (Singh, Hunter, Philip & Tyson, 2008), satisfaction (Pezzin, Dillingham, Mackenzie, Ephraim & Rossbach, 2004; Tate, Riley, Perna & Roller, 1997), and pain and functioning (Hirsh, Dillworth, Ehde & Jensen, 2010). The rehabilitation literature has focused primarily on male service members and veterans. Case Description and Methods The regional Veterans Affairs Prosthetic Conference had several goals, among them was to assess, with individual case details, the needs, concerns, and preferences of women prosthetic users. An open-ended facilitated discussion among a panel of women with major limb amputations was conducted as one session at the conference. A convenience sample of five veteran and nonveteran women, aged 19 58, with major limb amputations participated in a panel interview at a regional VA Prosthetics Conference in Female veterans and nonveterans who were known to staff members of the project team at a southeastern Veterans Affairs Medical Center or the local school of prosthetics were invited to participate. The first case is a 19-year-old woman with congenital right transhumeral and right transfemoral amputations. As she was growing up, she never thought that she could not participate in basketball, karate, gymnastics, the band, and going to the beach. She had a waterproof beach leg, a gymnastics arm, played the drums in the band, and ran a 12- minute mile. While she had a gymnastics arm for her sports activity, she typically did not use an upper extremity prosthesis. Moreover, she does not self-identify as disabled. The second case is a 25-year-old female veteran who sustained a traumatic transhumeral amputation due to a motor vehicle accident. She discussed her discomfort with the prosthesis as she did not like mechanical devices. The mechanical nature of the prosthesis made it difficult for her to adjust to having such a device as part of her body. This young woman reported having particular problems with two-handed activities. Ultimately, she preferred function over cosmetic features and used her body-powered prosthesis more often than her myoelectric-powered prosthesis. The third case is a 38-year-old professor with a transfemoral amputation acquired from a trauma when she was 2 years old. This professor became a prosthetist and now teaches in a prosthetics program at a community college. She described her ease in accommodating the changes in her weight due to pregnancy because she had insurance coverage and the ability to purchase an additional prostheses. Interestingly, this young woman s father was also an amputee. While her father prioritized functionality and chose not to wear a cosmetic cover on his prosthesis, the young woman preferred a more cosmetically appealing prosthesis. She became a prosthetist/orthotist in her early 30s. As a female professional educator, she appreciates the ability to wear high heel shoes in a variety of heights. The fourth case is a nurse in her mid-50s with congenital transradial and transfemoral amputations. As a nurse with a prosthetic arm, she experienced difficulties using rubber gloves. When she was a teenager, she was held back from participating in sports due to social expectations. For example, she was asked to be score-keeper instead of being a team member. With encouragement from her physician, this young woman s parents eventually allowed her to participate in dance lessons. Later, as a married woman with a toddler, she had difficulties with weight gain and related socket fit, resulting in feelings of less security while holding her child, so she opted to use a wheelchair during this phase instead of the prosthesis. The fifth case is a 58-year-old woman veteran who experienced vasculitis with subsequent gangrenous extremities leading to quadrilateral amputations including partial foot, transtibial, wrist disarticulation, and transradial amputation. This veteran is a single parent of teenagers and was driven to regain function and return to independence to care for her family. She reported body image concerns due to weight gain, and a desire to return to playing basketball with her children. Findings These five women described a variety of needs, concerns, and preferences for how best to provide optimal rehabilitation and prosthetic services for women with amputations. Female prosthetists were recommended, when available, so the patients dignity and privacy could be better protected when receiving clinical services. For 33

3 Preferences of women amputees C. A. Elnitsky et al. example, the women reported embarrassing examinations by male prosthetists particularly in cases of palpation high into the socket area or when interns or other observers are brought into the examining room without the patient s permission. For these women with amputations, privacy and dignity are the primary concerns. As described by the panel of women, they want both functionality and aesthetic appearance from prostheses. The other issue of importance to these women was the choice not to wear a prosthesis. Sometimes not wearing, or using another technology like a wheelchair, maximizes their independence. Women want to have the flexibility to make those choices. For these women, lack of participation in various life activities was related to prosthetic services. Patient-centered choices were restricted due to limitations in decision making and prosthetic design. A primary concern was the need to involve women in the decision-making process. In some cases, providers had made decisions without consulting the patients. Prostheses were found to be too heavy and too large for the smaller framed women. Women wanted adjustable feet to wear heels of different heights with varying clothing fashions. While cosmesis was a critical feature for most women, functional characteristics of the prosthesis were also important. Women requested more options for terminal devices to support a variety of activities, such as housekeeping and cooking. Likewise, more waterproof components are needed to facilitate patient participation in water sports. Women reported that the fixed ankle should be replaced with an ankle that articulates so that they can walk around barefoot if they so desire. The needs and preferences of women amputees may differ based on whether the amputations are congenital or traumatic, the woman s age, as well as the role and occupation of the individual. Hence, the importance of patient-centered choices is critical. Another major theme was weight gain, which resulted in problems with socket fitting and mobility as well as body image concerns. Discussion Social changes appear to have enhanced the opportunities for participation in work, school, sports, and social activities for women with amputations. A generational cohort effect was observed in the different attitudes regarding participation in activities from the protective parents of decades ago, to female amputees being more included in activities in recent years. Maximizing participation among women with amputations will require attention to their age and stage of development, dignity and privacy, patient-centered service provision including their participation in decision making and choice as to preferred features of prostheses, and continued improvements in design and features of prosthetic devices. In one study of successful prosthetic fitting, women were less likely to have been successfully fitted with a limb at discharge following amputation than men, and more of these women lived alone, making physical function difficult (Singh et al., 2008). Findings in satisfaction studies are equivocal. For example, investigators have found men were less likely than women to report satisfaction about their prosthetist s quality of care (Pezzin et al., 2004), whereas others have found no significant differences in quality of life or satisfaction between men and women with traumatic conditions such as amputation (Tate et al., 1997). While no differences between gender were reported in phantom limb pain or residual limb pain among persons with limb loss-specific pain, females did report greater overall pain and interference with function than did male participants (Hirsh et al., 2010). The case study results of these five women with major limb amputations in some ways stand in contrast to the findings of Pezzin et al. (2004). Women in the current case study described dissatisfaction with issues of privacy and dignity during the process of being fitted for prosthetics. Pezzin et al. (2004) found that women are more likely than men to express favorable perceptions toward their prosthetist in terms of quality of care. However, the authors did not inquire specifically about issues of privacy and comfort, but rather focused on technical skill, information giving, and interpersonal manner (Pezzin, et al., 2004). The concerns expressed by the women in this panel may tap into a phenomenon that has yet to be empirically measured in female amputees. While no other studies were found that reported the specific preferences of women with major limb loss for rehabilitation services, this clinical case study reports broader experiences of amputation rehabilitation preferences of women representing a variety of ages and stages of development across the lifespan. The current findings suggest a need to enhance communication between patients and providers to maximize the satisfaction and quality of care for this growing population with major limb loss (Pezzin et al., 2004). This glimpse into the lived experience provides insights useful to clinical practice and is worthy of future research and clinical attention. The Department of Veterans Affairs is emphasizing prevention and treatment of major limb amputations in 34

4 C. A. Elnitsky et al. Preferences of women amputees the current design and implementation of its new national delivery system, the Amputation System of Care. In 2008, the Department of Veterans Affairs Health Systems Committee approved development of this system in response to the increased need for system-wide rehabilitation services for veterans with amputations (Eckrich & Poorman, 2009). Currently, all levels of the outpatient Amputation System of Care are being implemented in the VA: (1) Rehabilitation Amputation Centers, (2) Polytrauma Amputation Network Sites, (3) Amputation Clinical Teams, and (4) Points of Contact. As the largest integrated health system within the United States, the VA has a unique opportunity to respond to these preferences for rehabilitation services and prosthetic features. As the current conflicts in Iraq and Afghanistan wind down, the number of women veterans seeking rehabilitation services will increase. A greater focus should be placed on the unique needs of this growing population. While the VA continues to improve its services for women veterans, clinicians, researchers, and senior leadership will be considering methods for ensuring implementation of these women s healthcare services and demonstrating the importance of the new services to healthcare outcomes of women veterans. With this information, rehabilitation and prosthetic service providers and organizations will be well positioned to provide high-quality treatment of amputations for this growing population of women veterans in national care delivery systems and communities. Acknowledgments The contents of this article do not represent the views of the Department of Veterans Affairs or those of the U.S. Government. Funding: This material is the result of work supported with resources and the use of facilities at the James A. Haley Veteran s Hospital, Department of Veterans Affairs, Tampa, FL. Health Services Research & Development/ Rehabilitation Research & Development Research Center of Excellence: Maximizing Rehabilitation Outcomes (HFP ). Conflict of interests: The authors declare that there are no conflicts of interest. References Eckrich, N., & Poorman, C. (2009). Report: Creation of the Amputation System of Care. Washington, DC: Department of Veterans Affairs. Key Practice Points The concerns identified by these women as high priorities included independence and participation in a full range of life activities, limitations in access, patient decision-making and body image concerns, and preferences for selected services. Maximizing function and quality of life for women amputees requires identifying patient preferences for rehabilitation and prosthetic services. A generational cohort effect was observed in the different attitudes regarding participation in activities from the protective parents of decades ago, to female amputees being more included in activities in recent years. Maximizing participation among women with amputations will require attention to their age and stage of development, dignity and privacy, patient-centered service provision including their participation in decision making and choice as to preferred features of prostheses, and continued improvements in design and features of prosthetic devices. Hirsh, A. T., Dillworth, T. M., Ehde, D. M., & Jensen, M. P. (2010). Sex differences in pain and psychological functioning in persons with limb loss. Journal of Pain, 11(1), House Committee on Veterans Affairs Subcommittee on Oversight and Investigations. (2010, May). Statement of Madhulika Agarwal, M.D., MPH, Chief Patient Care Services, Veterans Health Administration, U.S. Department of Veterans Affairs. Retrieved May 22, 2010 from veterans.house.gov/hearings/testimony_print.aspx? newsid=519&name=_madhulika Agarwal,_M.D.,_MPH Pezzin, L. E., Dillingham, T. R., Mackenzie, E. J., Ephraim, P., & Rossbach, P. (2004). Use and satisfaction with prosthetic limb devices and related services. Archives of Physical Medicine and Rehabilitation, 85(5), Sigford, B. J. (2010). Guest editorial: Paradigm shift for VA amputation care. Journal of Rehabilitation Research and Development, 47(4), xv. Singh, R., Hunter, J., Philip, A., & Tyson, S. (2008). Gender differences in amputation outcome. Disability Rehabilitation, 30(2), Tate, D. G., Riley, B. B., Perna, R., & Roller, S. (1997). Quality of life issues among women with physical disabilities or breast cancer. Archives of Physical Medicine and Rehabilitation, 78(12 Suppl. 5), S United States Congress. (2006a). 109th Congress: House Resolution Veterans Amputee and Rehabilitation Act of Retrieved May 22, 2010 from gov/cgi-bin/thomas 35

5 Preferences of women amputees C. A. Elnitsky et al. United States Congress. (2006b). 109th Congress: Senate Bill 2736 A Bill to require the Secretary of Veterans Affairs to establish centers to provide enhanced services to veterans with amputations and prosthetic devices, and for other purposes. Retrieved May 22, 2010 from gov/cgi-bin/thomas Earn nursing contact hours Rehabilitation Nursing is pleased to offer readers the opportunity to earn nursing contact hours for its continuing education articles by taking a posttest through the ARN website. The posttest consists of questions based on this article, plus several assessment questions (e.g., how long did it take you to read the articles and complete the posttest?). A passing score on the posttest and completing of the assessment questions yield one nursing contact hour for each article. To earn contact hours, go to and select the Education page. There you can read the article again, or go directly to the posttest assessment by selecting RNJ online CE. The cost for credit is $10 per article. You will be asked for a credit card or online payment service number. The contact hours for this activity will not be available after February 28,