SCIENTIFIC ARTICLE

Patient Satisfaction and Self-Reported Outcomes After Complete Brachial Plexus Avulsion Injury Lauren E. Franzblau, BS, Melissa J. Shauver, MPH, Kevin C. Chung, MD, MS

Purpose Reconstructive surgery for complete brachial plexus avulsion injuries only partially restores function, and many patients are dissatisfied with results that surgeons consider good. Preoperative expectations have been shown to influence postoperative satisfaction but are poorly understood in patients with complete brachial plexus avulsion injuries. Qualitative methodology can elucidate patient beliefs and attitudes, which are difficult to quantify. The purpose of this study was to examine patient-reported outcomes, including satisfaction, and to understand the patient perspective. Methods We used qualitative interviews and questionnaires to assess patient-reported outcomes. Two members of the research team analyzed interview data using Grounded Theory methodology. Data from participants who had and did not have reconstructive surgery were compared. Results Twelve patients participated in this study. Of the 7 participants who had reconstructive surgery, 4 felt their expectations had been met and 5 were satisfied with their outcomes. Reconstruction did not produce statistically significant improvements in upper extremity function, pain, or work ability. All patients reported dissatisfaction with upper extremity ability, and 9 expressed hope for innovative treatments (eg, stem cell therapy, nerve reinsertion) that could potentially provide better outcomes than existing procedures and enable return to work. Conclusions Satisfaction with surgical outcomes after complete avulsion brachial plexus injury depends heavily on whether preoperative expectations are met, but patients are unfamiliar with nerve avulsion and do not always know what to expect. Low satisfaction with upper extremity ability and the lack of statistically significant differences produced by reconstruction suggest that current treatments may not be meeting patients’ needs. Physicians must provide robust preoperative education to encourage realistic expectations and direct patients toward resources for pain management to facilitate comprehensive rehabilitation. (J Hand Surg Am. 2014;39(5):948e955. Copyright Ó 2014 by the American Society for Surgery of the Hand. All rights reserved.) Type of study/level of evidence Therapeutic III. Key words Brachial plexus, qualitative, nerve avulsion, patient-reported outcomes.

From the Department of Surgery, Section of Plastic Surgery, University of Michigan Medical School, Ann Arbor, MI.

No benefits in any form have been received or will be received related directly or indirectly to the subject of this article.

Received for publication October 24, 2013; accepted in revised form January 14, 2014.

Corresponding author: Kevin C. Chung, MD, MS, Section of Plastic Surgery, University of Michigan Health System, 2130 Taubman Center, SPC 5340, 1500 E. Medical Center Drive, Ann Arbor, MI 48109-5340; e-mail: [email protected].

The authors thank Lynda J. Yang, MD, PhD, for allowing them to contact her patients; Mallory Maynard for coding interview data; and Lin Zhong for helping with quantitative data analysis.

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0363-5023/14/3905-0017$36.00/0 http://dx.doi.org/10.1016/j.jhsa.2014.01.022

PATIENT SATISFACTION AFTER BPI

C

OMPLETE AVULSION BRACHIAL plexus injuries (BPIs) are life-changing traumatic events that typically affect young men during their prime working years.1e6 They can be treated by applying nerve transfer (NT) or functioning free muscle transfer (FFMT) procedures. Both NT and FFMT can provide limited function and are most effective when undertaken within 3 to 6 months and 9 to 12 months after injury, respectively.7 Amputation is also available to patients who do not wish to pursue reconstruction, or for whom other routes have failed; it serves to relieve patients of the burden of a flail arm.8 Although surgical reconstruction has many merits, it cannot restore all lost functions, improve neuropathic pain, or, in many cases, facilitate return to work.1,9,10 Pain management and employment appear to be primary concerns of patients; yet, the surgical literature has almost exclusively evaluated outcomes using functional measures (eg, elbow flexion). Assessing isolated functional gains can misrepresent outcomes and their value to patients.11 Results that are objectively good do not always satisfy patients, who may still experience chronic pain and be unable to work.1,3,10,11 It is necessary to identify and understand factors that are most important to patients, in order to assess outcomes in a meaningful way and improve rates of satisfaction. Patient satisfaction is a complex yet important construct. Higher satisfaction is associated with greater compliance with and continuity of care.12,13 Many fixed (eg, patient age) and changeable (eg, preoperative expectations) factors affect whether patients are satisfied with surgical results.12,13 Previous work has shown that patient and physician perspectives are often disparate, and many severe BPI patients are dissatisfied with surgical outcomes.3,14 The factors that contribute to this dissatisfaction are poorly understood. Such complex experiential and emotional phenomena are difficult to assess using a purely quantitative approach.15e17 A questionnaire can evaluate the severity of known sequelae, such as upper extremity disability, but cannot reveal how patients feel about their surgical outcomes or identify more appropriate constructs to measure. Hence, qualitative techniques can be pertinent to explore areas deficient in prior research and provide insight into patient beliefs and experiences.15,16,18 We present the results of a mixed-method cohort study using qualitative interviews and questionnaires to examine patients’ overall experiences, self-reported outcomes, and factors influencing satisfaction. We also compared results of patients who did and did not undergo reconstructive surgery, to determine how

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current treatments affect self-reported outcomes. This knowledge may enhance physicians’ understanding of the patient perspective and enable more effective preoperative counseling. MATERIALS AND METHODS Between 2002 and 2012, 163 patients with BPIs were seen at 1 academic medical center. Patients were screened for the following inclusion criteria: at least 18 years of age, complete C5eT1 BPI, normal upper extremity function before injury, and a minimum of 1 year after surgery (or injury for patients not undergoing surgery). Exclusion criteria were confounding neuropathies, nerve palsies, and congenital abnormalities affecting the upper extremity. A total of 23 eligible patients were contacted by mail, of whom 12 chose to participate (52%). Four patients explicitly declined to participate owing to travel distance or lack of interest, 2 missed study appointments for health reasons, and 5 did not respond to the letter or our 5 attempts to reach them via phone. Appendix A (available on the Journal’s Web site at http://www. jhandsurg.org) compares nonparticipant and participant characteristics. Participants received $100 gift cards as compensation for their time. Our local institutional review board approved all aspects of this protocol. Data collection We chose to use a mixed-method (quantitative and qualitative) approach to gain a more complete understanding of patients’ experiences and perspectives. In the absence of a standard patient-reported outcome assessment tool, we chose instruments validated in other patient populations that measure constructs relevant to complete avulsion BPI.6 All participants completed 3 questionnaires: the Michigan Hand Outcomes Questionnaire (MHQ), the Medical Outcomes Study 36-item Short Form (SF-36), and a modified satisfaction with appearance scale (shown in Appendix B, available on the Journal’s Web site at http://www.jhandsurg.org). The MHQ is a widely used instrument that has proven to be a valid, reliable, and responsive measure of functional, aesthetic, and pain-related outcomes in patients with acute and chronic diseases of the hand and wrist.19e21 Likewise, the SF-36 has been validated in patients with numerous health conditions; it assesses mental and physical health and also has normative data, which facilitate more accurate score interpretation.22,23 The satisfaction with appearance scale, which evaluates social-behavioral effects of noneweight-related body image, has been validated in patients with burn r

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injuries, who experience sudden aesthetic changes, as do patients with BPIs.24e26 Further information about the development, validation, and use of these questionnaires can be found in Appendix C (available on the Journal’s Web site at http://www.jhandsurg.org). Individual in-person interviews took place after completion of the questionnaires and included questions about injury and diagnosis, expectations regarding treatment, outcomes and satisfaction with treatment, and advice for future patients. For consistency, 1 member of the research team conducted all interviews. The interviewer followed a semistructured interview guide that was developed after preliminary review of the literature. Audio recordings of the interviews were transcribed verbatim.

concurrently until no new themes arose from the analysis (ie, saturation), after which the reviewers concluded their adjustment of the codebook.17 The final codebook was then applied once more to all transcripts to reveal the prevalence of themes in the data.17 Finally, after labeling and placing each occurrence of these themes into a spreadsheet, we selected representative quotations to include in this article. RESULTS Patient-reported outcomes Table 1 lists participant demographic data and injury factors. All FFMTs were successfully revascularized. For the first stage of double FFMTs, all subjects attained 60
to 80
elbow motion. However, participants who had reconstructive surgery did not report significantly higher MHQ or SF-36 domain or total scores (Appendix D, available on the Journal’s Web site at http://www.jhandsurg.org), and means for all subjects fell far below normal scores in 4 SF-36 domains (physical component summary, role limitations owing to physical symptoms, role limitation owing to emotional symptoms, and bodily pain). The MHQ scores revealed marked disability and low satisfaction; all subjects (surgical and nonsurgical) scored 0 for the ability to perform activities of daily living with the affected hand (0 ¼ most disability; 100 ¼ least disability), whereas the mean activities of daily living score for the unaffected hand was 95 (range, 45e100). Satisfaction scores averaged 10 (range, 0e50) for the affected hand and 95 (range, 67e100) for the unaffected hand. The modified satisfaction with appearance scale showed that most participants were dissatisfied with the appearance of the affected hand (n ¼ 8), arm (n ¼ 8), shoulder (n ¼ 7), and chest (n ¼ 6).

Data analysis Patient results were divided into 2 groups: those who had reconstructive surgery and those who had no BPI-related surgery or had an amputation. We used ManneWhitney U tests to compare mean group scores for each questionnaire. Grounded Theory methodology was used to guide our qualitative analysis. Grounded Theory is an iterative, inductive process through which researchers build a theory from a detailed analysis of the transcribed experiences of study participants. To prevent analytical bias, no hypotheses are defined at the onset of the project. Instead, the researchers approach the coding process open to all possibilities and identify concepts as they read transcripts. In this way, the findings and hypotheses that are generated are grounded in and applicable to the population of interest.16,17,27 This methodology has been applied to interviews with oncoplastic, tetraplegic, and neonatal brachial plexus palsy patients, to gain insight into the patient perspective.28e30 In accordance with Grounded Theory, we approached coding without a predetermined hypothesis to allow themes to emerge that reflected the patient experience and not the investigators’ ideas.17 Two members of the research staff performed coding independently to minimize bias.16 Coding involved 3 phases: open coding, creation of a codebook, and selective coding.17 During the first phase, the coders carefully read the transcripts, took detailed notes on their findings, and identified relevant themes and responses, which they labeled with codes.17 They then met to discuss these themes and agreed on a codebook (ie, a list of themes and concepts organized by category, code, and subcode).17 The coders met periodically to refine the codebook, reconcile discrepancies, and discuss emerging themes and relationships among them. Patient recruitment and coding continued J Hand Surg Am.

Interviews Four categories of themes (physical effects, work, reflection, and satisfaction) emerged from the coding process and are exemplified in Tables 2 to 6. All 12 participants reported physical limitations and an inability to participate in work and/or leisure activities (Tables 2e4). Three incurred injuries (eg, burn, frostbite) resulting from having an insensate arm, and 10 experienced chronic pain, which they described as pins and needles (n ¼ 4), stabbing or crushing (n ¼ 3), throbbing (n ¼ 2), and debilitating (n ¼ 1). Six subjects considered difficulty finding or returning to work to be the greatest limitation of BPI. Failure to return to work created financial stress and forced 5 subjects to seek new career paths (Table 3). r

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information (Table 6); for instance, participants who did not learn about reconstruction until after the ideal window for NT (3e6 mo after injury) stressed the importance of timing in BPI treatment. Satisfaction with care, surgical outcomes, and current abilities were assessed independently (Table 5). Six participants were dissatisfied with the care they received at smaller hospitals because they were misinformed, misdiagnosed, or not told about reconstruction options (Table 6). Four felt betrayed and blamed the hospitals for preventing them from obtaining treatment. Five reconstructive subjects were satisfied with their outcomes. The other 2 cited failure to meet preoperative expectations and inadequate functional gains as the reasons for their dissatisfaction. Five subjects criticized the functional gains of FFMT as insufficient, and 9 subjects expressed hope for the innovation of future treatments that could improve their function and pain (Table 5). For some, the hope was tied to a belief or desire that the condition was temporary.

TABLE 1. Demographics and Participant Characteristics Characteristic

Value

Age, y (n [range]) At injury

29 (4e58)

At time of study

37 (25e66)

Pre-injury occupation (n [%])* Construction/home improvement

4 (33)

Truck driving

2 (17)

Other physical work

4 (33)

Other nonphysical work

1 (8)

Unemployed

1 (8)

Trauma* Motorcycle accident

5 (42)

Snowmobile accident

2 (17)

Other motor vehicle accident

3 (25)

Fall/sports injury

2 (17)

Dominant hand affected Yes

6 (50)

No

6 (50)

Concomitant injuries Scapula, clavicle, rib fractures

DISCUSSION In our series of 12 patients with complete avulsion BPIs, we found work, pain, physical adaptation, body image, and hope for future treatments to be the primary themes in participants’ experiences. This is similar to the findings of Wellington,10 who identified employment, pain, body image, and sexuality as important to patients with various types of BPIs. However, the hope of patients for innovative treatments has not been discussed in the literature and provides meaningful insight into the patient perspective of treatment and outcomes. Our results suggest that the lay population is largely unfamiliar with BPI and that patients require thorough education to set appropriate goals for treatment. Unfortunately, in our sample this was not always the case because half of the subjects reported a lack of information regarding BPI diagnosis and/or treatment options. This suggests that initial care providers, especially at smaller hospitals, are not providing effective advice, information, and treatment. Early diagnosis and referral are critical to BPI management. Late presentation reduces the number of treatment options available and decreases the success of reconstructive surgery.7 Trauma centers must remain alert to the possibility of a BPI and act expeditiously to ensure that patients receive the care they need within the appropriate time frames. The 3 types of satisfaction examined in this study (satisfaction with care, outcomes, and current upper extremity status) appeared to be somewhat independent.

5 (42)

Vertebra fracture

4 (33)

Lower extremity fracture

4 (33)

Upper extremity fracture

3 (25)

Traumatic brain injury

2 (17)

None

2 (17)

Skull fracture

1 (8)

Surgical treatment Single FFMT

4 (33)

Double FFMT

2 (17)

NT

1 (8)

Amputation

1 (8)

None

4 (33)

Time to reconstructive surgery, mo (n [range])

11 (5e228)†

Time since injury, y (n [range])

8 (2e24)

Length of interview, min (n [range])

47 (16e104)

All participants were male. *Percentages do not add up to 100% owing to rounding. †Mean excludes 1 participant who waited 19 years to pursue treatment.

No participants had heard of BPIs before their injuries, which hindered their formulation of preoperative expectations (Table 5) and understanding of treatment options (Table 6). Participants’ reflections and advice for future patients focused on negative aspects of their experiences, including insufficient J Hand Surg Am.

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TABLE 2.

PATIENT SATISFACTION AFTER BPI

Remarks and Representative Quotations Relating to Physical Effects

Change in Handedness Six participants injured their dominant arms and had to learn to function using the other hand. This was a difficult and important struggle throughout their recovery. “I was right handed, so everything’s been a challenge or a learning process but you learn tricks and different things.”—35-year-old, no surgery, interviewed 13 years after injury “As far as getting along without it, I couldn’t think “left” 5 minutes before this happened. [Now] I function fairly well left-handed.”—66-year-old, amputation, interviewed 9 years after injury Change in Physical Ability All participants reported a change in physical abilities and essentially functioned using 1 hand. Some used their reconstructed arms for simple tasks. Eight felt that they had adapted and had found ways to accomplish their daily activities. “I used to do a lot of work with tools and so forth. A lot of those things I can’t do anymore because I just can’t do them onehanded.”—66-year-old, amputation, interviewed 9 years after injury “There are many things I miss, like the simple things, like clapping with 2 hands, giving a hug to the one you love, working out with both arms, cutting a steak at a meal, getting dressed with 2 arms and hands.”—48-year-old, FFMT, interviewed 11 years after injury “I can’t even really take care of myself.”—42-year-old, no surgery, interviewed 2 years after injury “I can hold a gallon of milk with the grip [but] only if my arm is out so the gracilis is already kind of stretched.”—25-year-old, double FFMT, interviewed 4 years after injury “I guess there’s just not many things that I don’t do myself. Opening a jar—I put it between my legs and open a jar.”—34-year-old, FFMT and wrist arthrodesis, interviewed 4 years after injury “When I need help with something, I either figure out how to do it on my own with 1 hand or I phone a friend”—35-year-old, no surgery, interviewed 13 years after injury Pain Ten participants reported chronic neuropathic or phantom pain. This pain did not improve over time. Five participants felt that their pain was affected by weather. “I think [the pain] honestly stayed the same. Brachial plexus injuries hurt for a long time. They really hurt and you got to find ways to cope with them.”—25-year-old, double FFMT, interviewed 4 years after injury “[The pain] just rolls me up in a fetal position and that’s where I stay sometimes for a day.”—66-year-old, amputation, interviewed 9 years after injury “It feels like someone’s crushing my arm . It’s usually when the weather changes, though . whenever the barometric pressure goes up or down drastically.”—26-year-old, no surgery, interviewed 3 years after injury “The strongest [pain medication] the doctor said he could give me without impairing my ability to work [stopped working] after a few months.”—51-year-old, no surgery, interviewed 7 years after injury

Although most participants were satisfied with the care they received and 5 of 7 were happy with their surgical outcomes, few were satisfied with their current function, appearance, or pain levels. As with other surgical populations, satisfaction with care was linked with perceptions of doctorepatient communication, and satisfaction with surgical outcomes depended largely on whether subjects felt their expectations had been met.13,31 However, many participants struggled to articulate what their expectations were and felt that they could not know what to expect without meeting someone who had undergone reconstruction, which implies that they could benefit from stronger preoperative education with tangible examples. Satisfaction with surgical results did not always translate into satisfaction with current upper extremity activity. There appears to be a disparity J Hand Surg Am.

between what patients need or hope for and what reconstruction can realistically achieve. Participants hoped for future treatments that would restore all function and enable them to return to their pre-injury work and leisure activities, which suggests that reconstructive surgery alone may not be adequate to achieve successful rehabilitation. One of the dissatisfied surgical patients offered the insight that whereas the surgeon saw what the patient could do after surgery, the patient was “seeing what [he] can’t do still.” When evaluating results, physicians should keep in mind that patients’ perceptions of functional restoration may be tempered by an overall sense of loss. Our quantitative analysis revealed no significant differences in patient-reported function, work ability, or role fulfillment between those who had r

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TABLE 3.

953

Remarks and Representative Quotations Relating to Work

Loss of Job and Financial Hardship For most patients, returning to work was not an option because they had been in physically demanding occupations. Eleven were employed before their injuries and only 2 returned to the same job. “I knew exactly where I was going, what I was doing and it just seemed like everything was ripped out from underneath me and I’d never do anything of the things I enjoyed again.”—25-year-old, double FFMT, interviewed 4 years after injury “I don’t know what to go back to. I don’t know what to do, basically.”—35-year-old, no surgery, interviewed 13 years after injury “Going from making really good money to zero is pretty tough. And still is tough.”—48-year-old, FFMT, interviewed 11 years after injury “I had to move back in with my parents.”—26-year-old, double FFMT, interviewed 4 years after injury Career Change The loss of their pre-injury occupations drove 5 participants to pursue new career paths. “My priorities have changed. I’m a full-time student now. I never had planned for that. I had planned on doing what I was doing before for long-term, so that’s kind of changed my perspective on things.”—34-year-old, FFMT and wrist arthrodesis, interviewed 4 years after injury “I can’t give up, so I have to figure out other ways of how to make a living, and going to school was the first big step.”—48-year-old, FFMT, interviewed 11 years after injury “I was a hot tar roofer. You don’t go back to that with only 1 arm ... I was on disability till it ran out and fortunately I was a position where I could retire at that point. Barely, but I could.”—66-year-old, amputation, interviewed 9 years after injury

TABLE 4.

the MHQ items because they simply did not use the affected hand or arm. Patients with BPIs experience limitations different from those with other upper extremity disorders (eg, sudden, complete loss vs slow degeneration) and require a tool that can accurately assess constructs that are relevant to them. Education and treatment of complete avulsion patients must be tailored to their needs as well. We recommend integrating pain management and return to work into preoperative education. In addition, patient testimonials or patient-to-patient advising could be used as supplementary sources of information. Participants considered pain and employment to be important parts of their experiences, and a number expressed the desire for firsthand information, which they felt would help them better understand what to expect from surgery. This study was limited by a number of factors, most obviously the small sample size, which restricts generalizability of the findings. Although the sample was entirely male, this was not a major limitation because the vast majority of patients with complete avulsion BPIs are male.4 However, the large proportion of nonresponders introduced response bias because nonparticipants may have had more negative experiences and therefore were not willing to be part of the study. Although we would have preferred a larger sample, after 12 interviews no new themes were emerging, which indicated that we had reached saturation and had obtained a sufficient number of participants for our qualitative analysis. However, the qualitative findings were likely to be limited by the

Return to Work Reconstructive Nonreconstructive Total (n ¼ 7) (n ¼ 5) (n ¼ 12)

Returned to same job

0

2

2 (17%)

Unemployed

4

1

5 (42%)

Retired

0

1

1 (8%)

In school

3

1

4 (33%)

reconstructive surgery and those who did not, which suggests that current procedures (NT and FFMT) may not provide practical function or meet all of patients’ needs. Furthermore, over half of the subjects were dissatisfied with the appearance of their upper extremities, and three quarters expressed the desire for better treatments to be developed. In light of this, we encourage larger studies of patient-reported outcomes involving patients who had no surgery and those who had reconstruction, to compare self-reported outcomes and better understand the utility of these operations. Furthermore, future studies should consider evaluating the cost-effectiveness of existing procedures to help guide clinical decision making. We also encourage the development of a BPIspecific outcomes assessment instrument. Patient reported that outcomes such as work ability, adaptation, body image, and pain are important determinants of patient satisfaction and must be incorporated into the evaluation of BPI treatments.13 Three subjects in this study reported having difficulty answering some of J Hand Surg Am.

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TABLE 5.

PATIENT SATISFACTION AFTER BPI

Remarks and Representative Quotations Relating to Satisfaction

Expectations Participants who had reconstructive surgery based their expectations on information from the surgeon and their own research. The rarity of the injury made it difficult for some to know what to expect. “I tried to be realistic and think this will help me a little bit.”—25-year-old, double FFMT, interviewed 4 years after injury “I’d never known anyone with this injury or that had a muscle transplant so I really didn’t know what to expect.”—34-year-old, FFMT and wrist arthrodesis, interviewed 4 years after injury “We discussed both stages of it and the outcome of it. If the hand went good and this one went good I’d at least be able to hold a cup or a glass of water and I was like, well that’d be great .”—48-year-old, FFMT, interviewed 11 years after injury Satisfaction Ten subjects reported being satisfied with the care they received for their BPIs at the University of Michigan. “They were really good people. . The care was real good, I thought. I got out earlier than I was ever supposed to.”—26-year-old, double FFMT, interviewed 4 years after injury “[The communication was] definitely a 10. [The surgeon] was great. I dealt with her the most and the other doctors, I think they were really good.”—26-year-old, no surgery, interviewed 3 years after injury Five of the 7 participants who underwent reconstructive surgery were satisfied with their outcomes. “I’m happy with [my outcome], [but] I wish there was more [the surgeon] could do.”—48-year-old, FFMT, interviewed 11 years after injury “They promised at least some motion that will help you with your daily activities . I’m happy about having the surgery, but also I’m really not satisfied about the outcomes so far.”—27-year-old, FFMT, interviewed 24 years after injury “I felt like I knew exactly what I was getting into . I think [the surgeons and I] pretty much agree that we’re happy with [the outcome].”—25-year-old, double FFMT, interviewed 4 years after injury Hope Nine participants expressed hope for new treatments to be developed that would improve their function or pain. “I just hope that, you know, one day, they’ll be able to cure this and fix it. Then it would give the person the life they had before.”— 48-year-old, FFMT, interviewed 11 years after injury “[Disability from BPI] might be temporary. Hopefully there is a solution to it.”—27-year-old, FFMT, interviewed 24 years after injury “I am still hoping for some kind of miracle cure.”—35-year-old, no surgery, interviewed 13 years after injury “I still have a glimmer of hope that someday they’ll be able to fix it.”—51-year-old, no surgery, interviewed 7 years after injury

TABLE 6.

Remarks and Representative Quotations Relating to Reflections

Lack of Information Six participants reported a lack of information or misinformation. This tended to be the case when they were initially treated at a smaller hospital. “I didn’t find out [that I had a BPI] until I [requested] my medical records and started reading them. I figured it out.”—48-year-old, FFMT, interviewed 11 years after injury “They’ve never told me I could get it fixed. They told me 1 time. It was last year when I came back, like 11 years later, for a checkup.”—35-year-old, no surgery, interviewed 13 years after injury “I took a magnetic resonance image (MRI) [at the other hospital]. They didn’t know what was wrong. So they took another MRI there and they still didn’t know what was wrong. So they took me to [another hospital] . and I took about 3 MRIs there. They didn’t know what was wrong.”—26-year-old, double FFMT, interviewed 4 years after injury Reflections About Treatment and Care All participants reflected on their experiences and offered advice for future patients. “I’d be giving [future patients] information and pushing them to see the doctors because there’s a time frame.”—48-year-old, FFMT, interviewed 11 years after injury “Don’t wait. Move as rapidly as you can.”—66-year-old, amputation, interviewed 9 years after injury “I’d ask [future patients] the same things like, ‘What do you expect to gain from this [surgery]? Is it gonna make a difference in your life?”—26-year-old, no surgery, interviewed 3 years after injury “Do the surgery with insurance. If you don’t have it, then I don’t think it’s really worth the amount of money it costs.”—31-year-old, FFMT, interviewed 6 years after injury

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recall bias of participants. It may have been difficult to accurately remember events, thoughts, and feelings from years ago. Despite their subjectivity, we believe their recollections are meaningful for the purposes of this study (ie, to understand patient experience, including hindsight). Finally, no questionnaires have been validated in this population of patients, including those used in this study. Patients must continue to cope with the severe physical disability and occupational limitations for life after BPI, whether or not they have surgery. Reconstruction often does not provide enough function to enable patients to return to work. Therefore, we believe that patients would benefit from the implementation of robust patient education programs, access to firsthand patient information, and referral to pain management specialists. These measures are less costly than surgical reconstruction and could facilitate more complete rehabilitation while minimizing physical and financial burdens for patients. Understanding the patient perspective and what factors influence patient satisfaction is essential for providing high-quality care and optimizing the treatment process for future patients.

11. Bengtson KA, Spinner RJ, Bishop AT, et al. Measuring outcomes in adult brachial plexus reconstruction. Hand Clin. 2008;24(4): 401e415, vi. 12. Chow A, Mayer EK, Darzi AW, Athanasiou T. Patient-reported outcome measures: the importance of patient satisfaction in surgery. Surgery. 2009;146(3):435e443. 13. Shirley ED, Sanders JO. Patient satisfaction: implications and predictors of success. J Bone Joint Surg Am. 2013;95(10):e69. 14. Ahmed-Labib M, Golan JD, Jacques L. Functional outcome of brachial plexus reconstruction after trauma. Neurosurgery. 2007;61(5):1016e1022. 15. Giacomini MK, Cook DJ. Users’ guides to the medical literature: XXIII. Qualitative research in health care A. Are the results of the study valid? Evidence-Based Working Group. JAMA. 2000;284(3): 357e362. 16. Shauver MJ, Chung KC. A guide to qualitative research in plastic surgery. Plast Reconstr Surg. 2010;126(3):1089e1097. 17. Strauss AL, Corbin JM. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. 2nd ed. Thousand Oaks, CA: Sage; 1998. 18. Paley J, Lilford R. Qualitative methods: an alternative view. BMJ. 2011 Feb 9;342:d424. http://dx.doi.org/10.1136/bmj.d424. 19. Chung BT, Morris SF. Reliability and internal validity of the Michigan Hand Questionnaire. Ann Plast Surg. 2013 May 30 [Epub ahead of print]. 20. Chung KC, Hamill JB, Walters MR, Hayward RA. The Michigan Hand Outcomes Questionnaire (MHQ): assessment of responsiveness to clinical change. Ann Plast Surg. 1999;42(6):619e622. 21. Shauver MJ, Chung KC. The Michigan hand outcomes questionnaire after 15 years of field trial. Plast Reconstr Surg. 2013;131(5):779ee87e. 22. McHorney CA, Ware JE Jr, Raczek AE. The MOS 36-Item ShortForm Health Survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Med Care. 1993;31(3):247e263. 23. Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). 1. conceptual-framework and item selection. Med Care. 1992;30(6):473e483. 24. Fauerbach JA, Heinberg LJ, Lawrence JW, et al. Effect of early body image dissatisfaction on subsequent psychological and physical adjustment after disfiguring injury. Psychosom Med. 2000;62(4): 576e582. 25. Lawrence JW, Heinberg LJ, Roca R, Munster A, Spencer R, Fauerbach JA. Development and validation of the Satisfaction With Appearance Scale: assessing body image among burn-injured patients. Psychol Assess. 1998;10(1):64e70. 26. Jewett LR, Hudson M, Haythornthwaite JA, et al. Development and validation of the brief-satisfaction with appearance scale for systemic sclerosis. Arthritis Care Res. 2010;62(12):1779e1786. 27. Kisala PA, Tulsky DS. Opportunities for CAT applications in medical rehabilitation: development of targeted item banks. J Appl Meas. 2010;11(3):315e330. 28. Dunn JA, Hay-Smith EJ, Whitehead LC, Keeling S. Liminality and decision making for upper limb surgery in tetraplegia: a grounded theory. Disabil Rehabil. 2013;35(15):1293e1301. 29. Potter S, Mills N, Cawthorn S, Wilson S, Blazeby J. Exploring inequalities in access to care and the provision of choice to women seeking breast reconstruction surgery: a qualitative study. Br J Cancer. 2013;109(5):1181e1191. 30. Squitieri L, Larson BP, Chang KW, Yang LJ, Chung KC. Medical decision-making among adolescents with neonatal brachial plexus palsy and their families: a qualitative study. Plast Reconstr Surg. 2013;131(6):880ee887e. 31. Hamilton DF, Lane JV, Gaston P, et al. What determines patient satisfaction with surgery? A prospective cohort study of 4709 patients following total joint replacement. BMJ Open. 2013 Apr 9;3(4). pii:e002525. http://dx.doi.org/10.1136/bmjopen-2012-002525. Print 2013.

REFERENCES 1. Choi PD, Novak CB, Mackinnon SE, Kline DG. Quality of life and functional outcome following brachial plexus injury. J Hand Surg Am. 1997;22(4):605e612. 2. Kaiser R, Mencl L, Haninec P. Injuries associated with serious brachial plexus involvement in polytrauma among patients requiring surgical repair. Injury. 2014 Jan;45(1):223e226. http://dx.doi.org/10. 1016/j.injury.2012.05.013. Epub 2012 Jun 1. 3. Kretschmer T, Ihle S, Antoniadis G, et al. Patient satisfaction and disability after brachial plexus surgery. Neurosurgery. 2009;65(4 suppl): A189eA196. 4. Shin AY, Spinner RJ, Steinmann SP, Bishop AT. Adult traumatic brachial plexus injuries. J Am Acad Orthop Surg. 2005;13(6): 382e396. 5. Dodakundi C, Doi K, Hattori Y, et al. Outcome of surgical reconstruction after traumatic total brachial plexus palsy. J Bone Joint Surg Am. 2013;95(16):1505e1512. 6. Hill BE, Williams G, Bialocerkowski AE. Clinimetric evaluation of questionnaires used to assess activity after traumatic brachial plexus injury in adults: a systematic review. Arch Phys Med Rehabil. 2011;92(12):2082e2089. 7. Giuffre JL, Kakar S, Bishop AT, Spinner RJ, Shin AY. Current concepts of the treatment of adult brachial plexus injuries. J Hand Surg Am. 2010;35(4):678e688; quiz 688. 8. Chuang DC. Adult brachial plexus reconstruction with the level of injury: review and personal experience. Plast Reconstr Surg. 2009;124(6 suppl):e359ee369. 9. Bertelli JA, Ghizoni MF, Loure Iro Chaves DP. Sensory disturbances and pain complaints after brachial plexus root injury: a prospective study involving 150 adult patients. Microsurgery. 2011;31(2):93e97. 10. Wellington B. Quality of life issues for patients following traumatic brachial plexus injury—Part 2 research project. Int J Orthop Trauma Nurs. 2010;14:5e11.

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APPENDIX A.

Characteristics of Participants and Nonparticipants Nonparticipants Nonresponse (n ¼ 5)

Decline (n ¼ 4)

Missed Study Appointment (n ¼ 2)

All Nonparticipants (n ¼ 11)

Participants (n ¼ 12)

40

46

36

42

36

6

4

5

6

9

Motorcycle accident

3

2

2

7

6

Snowmobile accident

1

1

0

2

2

Car accident

0

0

0

0

2

Other

1

1

0

2

2

Muscle transfer

2

0

1

3

6

Nerve transfer

2

0

1

3

1

Joint fusion

1

0

1

2

2

Age, y Time since injury, y Injury mechanism

Surgical treatment

Amputation

0

0

0

0

1

None/treated elsewhere

1

4

0

5

0

APPENDIX B.

Modified Satisfaction With Appearance Scale

In each of the following statements, circle the most correct response for you. The response choices are: 1 ¼ strongly disagree 2 ¼ disagree 3 ¼ somewhat disagree 4 ¼ neutral 5 ¼ somewhat agree 6 ¼ agree 7 ¼ strongly agree 1.

Because of changes in my appearance caused by my brachial plexus injury, I am uncomfortable in the presence of my family.

1

2

3

4

5

6

7

2.

Because of changes in my appearance caused by my brachial plexus injury, I am uncomfortable in the presence of my friends.

1

2

3

4

5

6

7

3.

Because of changes in my appearance caused by my brachial plexus injury, I am uncomfortable in the presence of strangers.

1

2

3

4

5

6

7

4.

I am satisfied with my overall appearance.

1

2

3

4

5

6

7

5.

I am satisfied with the appearance of my affected shoulder(s).

1

2

3

4

5

6

7

6.

I am satisfied with the appearance of my affected arm(s).

1

2

3

4

5

6

7

7.

I am satisfied with the appearance of my affected hand(s).

1

2

3

4

5

6

7

8.

I am satisfied with the appearance of my chest.

1

2

3

4

5

6

7

12.

Changes in my appearance have interfered with my relationships.

1

2

3

4

5

6

7

13.

I feel that my brachial plexus injury lesion is unattractive to others.

1

2

3

4

5

6

7

14.

I don’t think people would want to touch me.

1

2

3

4

5

6

7

Note: This survey was adapted with permission from Lawrence JW, Heinberg LJ, Roca R, Munster A, Spencer R, Fauerbach JA. Development and validation of the Satisfaction With Appearance Scale: assessing body image among burn-injured patients. Psychol Assess. 1998;10(1):64e70.25 Items 1 to 3 and 12 to 14 were adapted with permission from Blades B, Mellis N, Munster AM. A burn specific health scale. J Trauma. 1982;22:872e875. Copyright Lippincott Williams and Wilkins.

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APPENDIX C.

Questionnaires Used in This Study

Instrument

Construct(s) Measured

Development and Use

MHQ

MHQ has 6 domains pertaining to the hand/wrist: 1. Function 2. Aesthetics 3. Activities of daily living 4. Pain 5. Satisfaction 6. Work

The MHQ was developed in 1998 and has since been validated in patients with acute and chronic conditions.19e21 It is the only hand outcomes instrument to control for hand dominance.

SF-36

SF-36 has 8 scales that contribute to physical and mental health summary scores: 1. Physical functioning 2. Role limitations owing to physical symptoms 3. Bodily pain 4. General health 5. Vitality 6. Social functioning 7. Role limitations owing to emotional symptoms 8. Mental health

The SF-36 was constructed in 1992 using 8 health concepts drawn from the medical outcomes study and has been validated in patients with numerous health conditions.22,23 The SF-36 has normative data for the general population.

Modified Satisfaction With Appearance scale (SWAP)

Modified SWAP has 11 items that assess 3 domains: 1. Interference with relationships 2. Satisfaction with appearance 3. Social discomfort

The SWAP was developed to assess none weight-related body image after burn injuries and has been validated in burn patients.24,25 It has been modified and used in patients with systemic sclerosis.26 Our modified version is shown in Appendix A.

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Individual Participant MHQ and SF-36 Results 1

2

3

4

5

6

7

8

9

10

11

12

Current age, y

31

35

66

48

42

51

25

26

27

26

28

34

Dominant hand affected?

No

No

Yes

Yes

No

No

Yes

Yes

Yes

Yes

No

No

6

13

9

11

2

7

4

4

24

3

7

Average

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APPENDIX D.

Subject characteristics

Time since injury, y Operation (time to surgery)

FFMT (9 mo) None

Amputation, FFMT (2 y) None None FFMT (9 mo) shoulder arthrodesis (4 y)

Double FFMT (19 y) None NT (5 mo) FFMT (9 mo)

4

37

8

FFMT, wrist arthrodesis (9 mo)

MHQ

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Vol. 39, May 2014

Affected hand

14.5

11.9

40.2

17.5

13.1

20.1

26.7

24.0

22.3

30.7

14.1

46.7

23.5

Unaffected hand

80.5

71.3

87.1

82.5

47.4

86.4

81.7

89.2

81.2

85.4

76.5

84.2

79.4

18.8

6.3

68.8

25.0

18.8

37.5

37.5

18.8

6.3

68.8

37.5

50.0

32.8

100.0

87.5

100.0

100.0

75.0 100.0

100.0

100.0

100.0

100.0

100.0

25.0

90.6

Aesthetics Affected hand Unaffected hand Satisfaction Affected hand

0

0

0

0

100.0

75.0

100.0

100.0

Affected hand

85.0

85.0

0

70.0

85.0

Unaffected hand

15.0

30.0

0

0

Unaffected hand

0

0

12.5

0

16.7

8.3

33.3

50.0

10.1

100.0

100.0

95.8

100.0

100.0

100.0

94.8

85.0

50.0

60.0

50.0

60.0

95.0

50.0

64.6

85.0

0

10.0

0

0

5.0

0

0

12.1

0

0

66.7 100.0

Function relative to pain

Activities of daily living Affected hand

0

0

0

0

100.0

100.0

100.0

100.0

Both hands

46.4

50.0

75.0

0

0

46.4

60.7

0

Ability to work

25.0

25.0

35.0

45.0

35.0

45.0

25.0

85.0

45

34.1

35.4

45.5

27

39.9

45.6

45.5

41

Unaffected hand

45.0 100.0

0

0

0

0

0

0

0

100.0

100.0

100.0

100.0

100.0

100.0

95.4

32.1

64.3

17.9

100.0

41.1

30.0

35.0

0

80.0

38.8

31.7

23.7

46.5

38.4

SF-36, version 2 Physical component score

(Continued)

PATIENT SATISFACTION AFTER BPI

J Hand Surg Am.

Total score

APPENDIX D.

Individual Participant MHQ and SF-36 Results (Continued) 1

2

3

4

5

6

7

8

9

10

11

12

Average

Mental component score

42.9

56.9

57.6

36.4

29.3

41.5

53.2

56

37.4

66.1

65.5

50.4

49.4

Physical functioning

46.5

36

42.3

50.7

19.2

46.5

46.5

46.5

44.4

27.6

40.2

42.3

40.7

Roleephysical

37.3

29.9

25

29.9

20.1

27.5

39.7

37.3

32.4

34.8

17.7

39.7

30.9

Bodily pain

29.2

37.2

33.4

29.2

24.9

33.4

41.4

50.3

41.8

41.4

19.9

37.2

34.9

General health

62.5

52.9

63.9

57.7

35.3

52.9

55.3

60.1

37.7

55.3

57.7

62.5

54.5

Vitality

49

52.1

52.1

45.8

49

45.8

61.5

58.3

49

61.5

42.7

64.6

52.6

Social health

45.9

51.4

45.9

45.9

24.1

35

56.8

45.9

29.6

51.4

56.8

56.8

45.5

Roleeemotional

36.4

48.1

48.1

32.6

13.1

36.4

40.3

44.2

36.4

55.9

52

32.6

39.7

Mental health

41.6

50

55.6

33.1

27.5

44.4

50

61.3

38.7

55.6

61.3

47.2

47.2

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