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When Walking Fails

Mobility Problems of Adults with Chronic Conditions

Lisa Iezzoni (Author)


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ISBN: 9780520937123
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Roughly one in ten adult Americans find their walking slowed by progressive chronic conditions like arthritis, back problems, heart and lung diseases, and diabetes. In this passionate and deeply informed book, Lisa I. Iezzoni describes the personal experiences of and societal responses to adults whose mobility makes it difficult for them to live as they wish—partly because of physical and emotional conditions and partly because of persisting societal and environmental barriers.

Basing her conclusions on personal experience, a wealth of survey data, and extensive interviews with dozens of people from a wide social spectrum, Iezzoni explains who has mobility problems and why; how mobility difficulties affect people's physical comfort, attitudes, daily activities, and relationships with family and friends throughout their communities; strategies for improving mobility; and how the health care system addresses mobility difficulties, providing and financing services and assistive technologies.

Iezzoni claims that, although strategies exist to improve mobility, many people do not know where to turn for advice. She addresses the need to inform policymakers about areas where changes will better accommodate people with difficulty walking. This straightforward and engaging narrative clearly demonstrates that improving people's ability to move freely and independently will enhance overall health and quality of life, not only for these persons, but also for society as a whole.
List of Illustrations and Tables
Foreword, by Daniel M. Fox and Samuel L. Milbank
Acknowledgments
Preface

1. Mobility Limits
2. Who Has Mobility Difficulties
3. Sensations of Walking
4. Society's Views of Walking
5. How People Feel about Their Difficulty Walking
6. At Home--With Family and Friends
7. Outside Home--At Work and in Communities
8. People Talking to Their Physicians
9. Physicians Talking to Their Patients
10. Physical and Occupational Therapy and Other Approaches
11. Ambulation Aids
12. Wheeled Mobility
13. Who Will Pay?
14. What Will Be Paid For?
15. Final Thoughts

Appendix 1. Faniliar Interviewees
Appendix 2. Selected Rsources
Notes
References
Index
Lisa I. Iezzoni is Professor of Medicine at the Harvard Medical School and the Beth Israel Deaconess Medical Center, Division of General Medicine and Primary Care. She is the editor of Risk Adjustment for Measuring Healthcare Outcomes (1997).
"[Iezzoni] conveys a high degree of authenticity in her writing and a convincing combination of personal experience and professional expertise. . . .An interesting and enlightening read."—Susan M. Allen Health Affairs
"As an accessible and informative look at an issue that touches so many, and as a critique of public policy that is evidently in need of major improvement, this is a valuable work for academic and public libraries."—Library Journal
“In this wonderful book, Lisa Iezzoni opens a window to the overlooked world of people with mobility problems. . . . An appendix of resources enhances this useful, interesting, and well-written book, which contains more than enough information to qualify as a textbook but is fast and enjoyable to read.”—New England Journal Of Medicine
“[Dr. Iezzoni] writes poignantly of her battle with multiple sclerosis.”—Linda Villarosa New York Times
"In this warm and engaging book, Lisa Iezzoni sends the important message that life should not stop when walking fails. Using the stories of ordinary people, she suggests strategies for remaining active and independent. Iezzoni's book will inspire families, health care professionals, and political representatives to help remove the barriers and enable all those with mobility challenges to lead full and productive lives."—Rosalynn Carter

"Iezzoni turns a spotlight on the sociocultural and policy shadows that must be illuminated to address the growing needs of Americans with mobility limitations. Her evocative portrait of the challenges faced by both those with walking difficulties and the clinicians who try to serve their needs is a compelling wake-up call for Americans and a must-read for all health professionals and policy makers."—Alan M. Jette, Dean, Sargent College of Health and Rehabilitation Sciences, Boston University

"Blending an epidemiologist's hard data with a reformer's passionate, personal appeals, Iezzoni leads us through the parallel universe of people with mobility problems—a dimension largely invisible to those of us who can move around without even thinking about it, but all too real to those who live there."—Frank Davidoff, Editor Emeritus, Annals of Internal Medicine

"Lisa Iezzoni has written a truly remarkable book. She takes the proposition that health professionals need to worry about their patients' functional capacities as well as their illnesses, and uses that as the basis for a pathbreaking analysis of the effects of failure in one of the basic human functions—walking. Everyone involved in providing, studying, analyzing, administering, or making policy about health care for those with chronic illnesses or disabilities should read this book."—Bruce C. Vladeck, Senior Vice President and Professor, Mount Sinai Medical Center

"From both a personal and professional perspective, Lisa Iezzoni opens the hidden world of mobility problems, revealing the creative ways in which individuals adjust emotionally and practically, and the mostly short-sighted and frustrating ways in which health professionals, policy makers, and insurers have responded to their needs. This book is an essential resource for everyone who has or may have a problem walking, as well as for their family members and doctors."—Carol Levine, Director, Families and Health Care Project, United Hospital Fund of New York

"Thoughts and emotions associated with the loss and restoration of mobility are presented through users’ and rehabilitation professionals’ words, which makes this a reader-friendly book."—Catherine A. Trombly, Professor Emerita of Occupational Therapy, Sargent College of Health and Rehabilitation Services, Boston University

"Dr. Iezzoni has accomplished the daunting task of explicating the experience of people with mobility problems as they have lived it in the context of health care and public policy. Part autobiography, part interview, she unsentimentally tells her own story and the stories of others who have been challenged by a world that too often presumes the ability to walk. Dr. Iezzoni also succinctly exposes the challenges to individuals with mobility problems created by policies that may not be in anyone's interest. An important contribution to the study of disability and ability, this book has valuable insights for patients, health professionals and policy makers."—Andrew A. Guccione, Senior Vice President, Division of Practice and Research, American Physical Therapy Association

Technical Appendix 1: Interview Methods

The interviews for this project involved 119 persons and were conducted in the following formats:

  • individual interviews with 34 people who have difficulty walking, almost all with progressive chronic conditions; some interviews involved family members and almost half occurred in interviewee's home or workplace
  • focus groups (i.e., group interviews) involving 22 people with difficulty walking because of progressive chronic conditions
  • individual interviews with 22 practicing physicians
  • separate focus groups with physical and occupational therapists (7 and 6 participants, respectively)
  • individual interviews with 28 other persons, including medical directors of large health insurers, other clinicians (e.g., nurses and social workers), clinical educators, persons with a family member (e.g., a parent or sibling) with walking difficulties, assistive device vendors, disability rights advocates, and policy experts
For a brief discussion about paying for mobility aids (When Walking Fails, chapter 14), I used responses from an additional focus group conducted for another study (funded by the Agency for Healthcare Research and Quality, HS10223). This focus group included eight women, all wheelchair users, and took place on 27 September 2000.

For three years I kept a journal recording informal conversations with my "rolling focus group"—taxi drivers, flight attendants, shop clerks, strangers who approached me. I analyzed only the formal interviews for this work but occasionally offer snippets from the rolling focus group to illustrate points.

The interviewers audiotaped all individual interviews, then an administrative assistant transcribed these audiotapes verbatim. Focus groups were both audiotaped and videotaped, with audiotapes transcribed verbatim by an experienced transcription service. I compared typed transcripts of the focus groups to videotapes of those group interviews to identify speakers and to ensure the accuracy of the transcriptions. We conducted all interviews in spoken English.

Throughout this project, I quote people in their own words based on the typed verbatim transcripts. Routine speech, however, contains many sounds, words, and phrases—such as "um," "ah," "like," and "you know"—that are tedious to read. In addition, people often stop and start sentences, repeat phrases, switch verb tenses or pronouns midstream, and speak thoughts that are understandable in person (i.e., because of gestures and facial expressions) but unintelligible afterward when written verbatim. Because I conducted the vast majority of individual interviews and attended all focus groups except one (by design, as described below), I could decipher most of the confusing portions of the transcripts.

To improve clarity and readability, I therefore edited the transcripts. As much as possible, I kept people's own words and grammatical constructions but generally removed sounds and repetitious patterned phrases (e.g., "uh," "like," "you know"), eliminated false starts of sentences, and clarified as necessary. When comments that I quote sequentially actually occurred at different points during the interview, I note the gap with ellipsis points ( . . . ).

The Beth Israel Deaconess Medical Center's Committee on Clinical Investigations approved this study. We obtained written informed consent from all interviewees with mobility difficulties interviewed in person and from the physical and occupational therapists who participated in focus groups. We obtained verbal consent from other interviewees. As part of the consent agreement, I agreed to protect the anonymity of the interviewees. Therefore, with a few exceptions, I use pseudonyms for all interviewees and change small details about their personal histories (such as number of children and precise job). The exceptions involve several people I interviewed as "experts," from whom I obtained explicit written permission to use their names. I offered persons with mobility difficulties $75 for participating, although ten individuals refused payment.

Unlike the NHIS, which queried nationally representative individuals and households, my interviewees are a convenience sample—people identified through various means (described below) who agreed to participate. Focusing on adults, I aimed for diversity in the ages, races, and chronic conditions of persons with impaired mobility, but the sociodemographic and clinical characteristics of my interviewees certainly do not parallel those of the national population. The majority of interviewees with impaired mobility lived in eastern Massachusetts, as did all of the clinicians. Therefore, the interviewees' views may differ in some respects from those of adults nationwide, especially persons from linguistic minorities.

 

Interviewing People with Mobility Difficulties

In qualitative studies, the characteristics of the interviewer, moderator, and other participants can affect people's willingness to respond openly. My wheelchair use undeniably influenced how interviewees related to me, facilitating certain interactions but at times having the opposite effect. Based on my rolling focus group encounters, I suspected that many respondents would want to question me and perhaps divert the interview toward their interests. On balance, however, I believe that my wheelchair use made interviewees more open, as others have found (C. Miles-Tapping and J. L. MacDonald, "Lifestyle Implications of Power Mobility," Physical and Occupational Therapy in Geriatrics 12, no. 4 [1994]:31-49). I either conducted or was present at all interviews of persons with mobility difficulties with one exception—a focus group involving African American participants, described below. In interpreting my results, I therefore made respondents' perceptions of my wheelchair use an important consideration.

 

Individual Interviews

I conducted all thirty-four individual interviews of persons with impaired mobility. The interviews occurred from 25 April 1997 through 5 August 1998, and each lasted about two hours. I carried out fourteen interviews in people's homes (one in metropolitan Washington, D.C., the others in eastern Massachusetts), two in their workplaces, one at the person's church, one in a hotel I was visiting in the Midwest, three by telephone (two with persons in the South and one in California), and the remaining thirteen in my office or my hospital's outpatient clinical center.[Note 1] In five instances, spouses participated in the interview, and one of these also included an adult son. In four additional situations, I met the spouse briefly, but he or she did not join the interview.

I used a small dictation tape recorder to audiotape the interviews, turning on the recording only after obtaining written informed consent. After each interview, I wrote extensive field notes, describing the personal appearance and demeanor of the interviewee(s), his or her mobility, the accessibility and attributes of the interview location, conversations before and after the audiotaping, and my personal feelings about the interviews.

No official "registry" exists of persons whose mobility is impaired by progressive chronic conditions. Therefore, I recruited interviewees from various sources that include requests to my physician colleagues to recommend appropriate patients; word of mouth; an e-mail broadcast through a housing advocacy group; and solicitations among parishioners at a church outside Boston. My physician colleagues typically approached their patients first to ascertain willingness to speak with me. In only a few instances, when the physician had not made an initial contact, persons refused to participate, generally denying that they had mobility problems. For my other recruitment strategies, people had to take the positive step of approaching me.

Although I interviewed a convenience sample, my thirty-four interviewees nevertheless had diverse sociodemographic characteristics, as follows:

  • 3 were under 40 years of age; 8 were 40 to 49; 6 were 50 to 59; 7 were 60 to 69; 8 were 70 to 79; and 2 were 80 years old or older
  • 21 were women
  • 25 were white, and 9 were black
  • 10 had a high school education or less; 8 had some college or were currently attending school; 8 had completed college degrees; and 8 held graduate degrees
  • 15 had annual incomes less than $20,000; 7 had incomes between $20,000 and $40,000; and 12 had incomes over $40,000
With four exceptions, all persons had progressive chronic conditions acquired in adulthood, including degenerative joint disease or osteoarthritis, back problems, multiple sclerosis, Parkinson's disease, amyotrophic lateral sclerosis, myasthenia gravis, peripheral vascular disease, diabetes mellitus, obesity, asthma, chronic obstructive pulmonary disease, stroke, and heart conditions. Many people had multiple conditions (the most common combination was diabetes, obesity, and arthritis) and could not identify a single cause for their mobility difficulties.

In four instances, people did not have typical, acquired, progressive, chronic conditions, but their debilities were nevertheless chronic. Jody Farr has a rare form of muscular dystrophy, obviously a congenital condition, but it was undiagnosed until she was in college. From that point onward, her impairments progressed. Barbara Forrest's internist, who recommended that I speak to her, still had no complete explanation for what caused her to become acutely unable to walk a few years previously. Ms. Forrest had recovered much of her ability to stand and walk, but she remains slow and falls frequently, risking injury. Natalie Strong had cerebral palsy, a congenital condition, affecting only her legs. However, repeated falls produced progressive impairment, much like an increasingly debilitating condition. Finally, Joe Warren had scoliosis, a progressive curvature of the spine, which required surgery and prevented him from walking for roughly a year as a young adult. Today, however, his major debility relates to a partial spinal cord injury from a car accident.

Only four people did not use any mobility aid, although each of these persons walked slowly and could go only short distances. Most people used one mobility aid, while others employed different mobility aids in different settings. Thirteen used a cane at least some of the time, while six used walkers, two used crutches, seven used manual wheelchairs, three used power wheelchairs, and seven used scooters.

During the interviews, I asked open-ended questions following a semistructured interview guide. Depending on the interviewees' responses, I often changed the order of specific questions but covered all topics before concluding the interviews. The guide encompassed my areas of interest and reflected literature reviews, insights from the rolling focus group, and personal experiences. I treated the first three interviews as a pilot test but did not modify the interview guide substantially after these interviews. The order and general topics of the questions were as follows:

  1. brief biographical history
  2. description of walking difficulty, physical sensations, causes, and course
  3. experiences with medical care system, physicians, and other clinicians
  4. strategies for getting around, including use of mobility aids
  5. health insurance and financial considerations
  6. effect of mobility difficulties on daily life, family, friends, employment (as appropriate), sense of self, and plans for the future
  7. interactions with strangers around mobility difficulties and perceptions of societal attitudes
  8. suggestions for services that would help
  9. whether persons view themselves as disabled and what they know about the ADA
  10. sociodemographic characteristics
Some interviewees wanted to know something about me and my life with my scooter.[Note 2] I asked to defer questions until after completing the interview protocol and, turning off the tape recorder, then spent as long as people wished answering their inquires. Occasionally, people revealed important personal information during these postinterview sessions, and I recreated these conversations by writing field notes soon afterward.

Depending on the referral source, I attempted to determine how my interviewees were doing several years later. In certain instances, I could not easily trace interviewees without breaching their confidentiality; therefore, my follow-up is incomplete. At least eight interviewees have died, some within months of the interview. Throughout the text, I refer to interviewees who have died in the past tense.

 

Initial Focus Groups

Individual interviews offer rich insight into individuals' experiences. Group interviews, however, provide not only individuals' insights but also an opportunity for stimulating exchanges—as participants share or challenge opinions, make suggestions, agree and disagree. The goal of the focus group is not to reach consensus but to elicit a full range of viewpoints and experiences. Therefore, I organized three focus groups, each drawing participants who have difficulty walking because of progressive chronic conditions.

Moderating a focus group requires special skill in listening, facilitating open expressions of opinions, encouraging contributions from all participants, and moving the discussion forward to cover the designated topics. I therefore worked with Lisa LeRoy, M.B.A., an experienced focus group moderator, to design the moderator's guide and conduct the initial focus groups. Based on my early individual interviews, we created a focus group moderator's guide specifying open-ended questions to address topics parallel to those in the individual interview during a two-hour period.

From early individual interviews and published literature, I believed that belonging to a racial minority might further compound any social stigmatization generated by having a physical functional debility, such as impaired walking. I therefore wanted to conduct a focus group in which participants could freely raise the role of race. And—though focus group experts disagree on whether participants of groups where race might be salient need all be of the same race—I decided that at least one focus group should involve only black individuals (including moderator, videographer, research assistant, and interviewees), and that I would not attend that focus group.[Note 3] Ms. LeRoy and I identified and trained the moderator, Maritza Hall, instructing her to ask probing follow-up questions about the role of race at appropriate points. A nurse-manager at a neighborhood health center recruited interviewees based on her knowledge of patients at the center and our specifications (black persons with mobility impaired by progressive chronic conditions).

I also wanted one focus group to include only wheelchair users, anticipating that they might speak more freely among themselves about the challenges of wheeled mobility. I recruited participants through outpatient social workers and held the meeting at a wheelchair-accessible facility. Nevertheless, transportation to and from the focus group proved to be difficult for some potential participants, and this focus group involved only four interviewees.

The three focus groups were as follows:

  • 16 March 1998, moderated by Ms. LeRoy, at a church in a working- and middle-class town outside Boston. The ages of the six participants were 37, 49, 66, 69, 70, and 93 years. Five were women; all were white. Three had only high school educations, while three had college degrees. Four participants had arthritis, and two had peripheral vascular disease, but four had multiple conditions (e.g., diabetes and heart disease). Three used a cane (although one also had a scooter), and two did not use mobility aids.
  • 10 June 1998, moderated by Ms. LeRoy, at Beth Israel Deaconess Medical Center. The four participants were 47, 56, 57, and 65 years of age. Three were men; three were black. One had only a sixth-grade education; two had finished high school, one with vocational training; and one had a master's degree in special education. The chronic conditions included diabetes (one with an amputation of his lower leg), arthritis, coronary artery disease, postpolio syndrome, and cerebellar ataxia. Two people had multiple conditions. All four used wheelchairs: two used four-wheeled power wheelchairs, one a manual wheelchair, and one a scooter.
  • 23 July 1998, moderated by Ms. Hall, at a neighborhood health center in Boston. The eleven participants were 46, 53, 55, 59, 61, 64, 68, 71, 73, 74, and 77 years old. Ten were women; all were black. Two had a middle school education; five had graduated high school; and four had some college education. Their chronic conditions included arthritis, stroke, asthma, heart disease, multiple sclerosis, and gout. Five persons had multiple conditions.
After each focus group, the moderator, research assistant (who helped with logistics and witnessing the informed consent), and I had a debriefing session and talked systematically about what we had learned from the group.

 

Follow-up Focus Groups

After completing the individual interviews, initial focus groups, preliminary analysis of the interview texts, and analyses of the NHIS-D (see Iezzoni et al. 2000a, 2000b, 2001), I conducted two additional focus groups. My purpose with these groups was to present preliminary findings to participants and ask their opinions—did the results make sense given their personal experiences, viewpoints, and observations? I moderated these focus groups and designed the moderator's guide around the following six questions:

  1. How common are walking difficulties?
  2. How does walking difficulty make people feel emotionally?
  3. What are people's experiences with mobility aids?
  4. How does walking difficulty affect daily life?
  5. How does walking difficulty affect people's ability to get health-care services?
  6. How do society's attitudes toward walking difficulty affect people?
For each question, I assembled brief illustrative quotations from prior interviews or key findings from the NHIS-D. During the follow-up focus groups, I read these findings to participants and asked for their responses.

For the first follow-up focus group (15 July 1999), I invited five people who had been particularly articulate and insightful when interviewed before: Gerald Bernadine, Lester Goodall, Michael Sexton, Stella Richards, and Louisa Delarte.[Note 4] For the second follow-up focus group (28 July 1999), I reinvited the eleven persons who had participated in the neighborhood health center focus group.[Note 5] One person had died, and she was replaced by another woman who had not been interviewed previously. Therefore, the two follow-up focus groups involved fifteen previous interviewees and one new person.

 

Interviews with Clinicians and Experts

All interviews with clinicians were conducted in person, but many expert and other interviews occurred over the telephone. Given my experiences in medical school and as a faculty member in primary care medicine, I anticipated that physicians might hesitate to speak openly about mobility difficulties to someone using a wheelchair. Telephone interviewees would not necessarily know that I use a scooter (unless I told them or they knew of me already), but clinicians interviewed in person certainly would. I therefore enlisted the assistance of David Stone, Ph.D., who does not use a mobility aid, to conduct a set of individual physician interviews. Ms. LeRoy moderated the focus groups of physical and occupational therapists, although I was present and identified as the project director.

 

Physicians

I conducted twelve interviews with practicing physicians, and Dr. Stone conducted ten. My interviews occurred from 29 July 1996 through 13 May 1999, while Dr. Stone's ranged from 10 February 1998 through 15 July 1998. I chose a purposeful sample of clinicians I knew (six primary care physicians and six specialists), while Dr. Stone had a more "random" sample of primary care physicians. We took the roster of a large integrated health delivery system with physician practices throughout metropolitan Boston and randomly selected names in geographically dispersed areas. However, that strategy had limited success. Most physicians said they were too busy for the interview; those who agreed to participate were often younger doctors who did not yet have full patient panels. We identified six of Dr. Stone's ten physician interviewees using this approach; the other four were practitioners with whom Dr. Stone was already familiar, two of whom also knew me.

The physician interviews took from half an hour to just over an hour and followed a semistructured script of open-ended questions I had prepared after several initial interviews and reviewed with Dr. Stone. The script covered the following topics:

  1. training (in medical school, residency, and afterward) in assessing lower-extremity mobility, including descriptions of specific patients who personified this topic
  2. current practices around evaluating and addressing lower-extremity mobility
  3. referrals to other physicians and physical and occupational therapists
  4. experiences with mobility aids
  5. observations about patients and their attitudes about walking, including questions about specific issues (e.g., "malingering," "use it or lose it")
  6. effects of the current health-care environment, including financial and time pressures
My fears about the physician interviewees' reticence facing a wheelchair user proved groundless. My colleagues spoke remarkably openly, often confessing almost complete ignorance on the topic or virtual indifference.

In addition to the formal, individual physician interviews, I also moderated two physician focus groups:

  • nine fellows training in general internal medicine and three attending primary care physicians (19 February 1997)
  • six fellows training in general internal medicine and two attending primary care physicians (20 January 1999)
Unlike the other focus groups, which were both audiotaped and videotaped, these focus groups were only audiotaped (the second one had very poor quality sound). The groups did yield useful insight into medical school and residency training, which the fellows had only recently completed. However, because of technical problems with the transcripts (they did not always show who was speaking), I did not formally analyze these focus groups and relied on them only for background information.

 

Physical and Occupational Therapists

Ms. LeRoy moderated two separate focus groups involving seven physical therapists (3 June 1999) and six occupational therapists (19 May 1999). We recruited therapists from the outpatient and home-care practices affiliated with Beth Israel Deaconess Medical Center, the Boston University's Sargent College of Health and Rehabilitation Sciences , and the local visiting nurses association. All therapists had experience working with people with impaired lower-extremity mobility caused by progressive chronic conditions.

 

Experts and Others

I conducted telephone interviews with six health insurance representatives, identified largely through contacts at the American Association of Health Plans, Health Insurance Association of America, and Massachusetts Blue Cross. I had hoped to interview more insurance representatives, especially medical directors at health plans. However, health insurance representatives were unenthusiastic about being interviewed, perhaps because of the climate of "managed-care bashing" in 1998 and 1999. In addition, I conducted twenty-two interviews with other persons with an interest in or experiences with walking difficulties, including nine disability- or disease-specific patient rights advocates (e.g., representatives from the Arthritis Foundation, National Multiple Sclerosis Society, and Parkinson's Disease Foundation), persons representing the assistive technology industry persons representing the American Medical Association, health policy experts, clinical educators, nurses, social workers, and wheelchair vendors. Before beginning each telephone interview, I secured permission to audiotape the conversation.

 

Analysis

For each category of interviewee, I learned little new from the later interviews. Although the details of lives or experiences obviously differed, people repeated the same broad themes or concepts already raised by others. Qualitative researchers view this absence of new information among late interviewees as a useful sign, suggesting that although the absolute number of interviewees is relatively small, the interviews captured the critical, shared experiences.

Once transcribed, the interviews produced hundreds of pages of texts. I conducted all analyses myself, although I discussed ideas and findings with Ms. LeRoy and Dr. Stone. I explored but decided against using computerized software to code the texts.[Note 6] I read through each text several times, highlighting key concepts in the margins. I then printed out segments of texts (sometimes a paragraph, sometimes several pages) and placed these in a file with other texts relating to the same topic. Through this process, I produced about one hundred subject-specific files for the interviews of persons with mobility problems and thirty for the physician interviews. In preparing to write this book, I reviewed folders applicable to the subject at hand, writing a summary of key points raised by each interviewee's comments and highlighting particularly cogent quotations. I therefore reviewed these texts multiple times over more than two years.

The two follow-up focus groups helped validate my analyses. The major goal of these follow-up interviews was to test my preliminary interpretations and hypotheses. These focus groups generally validated my conjectures but often provided more colorful or pointed ways of articulating the ideas. My analyses, however, were certainly limited by the absence of extensive external review and by being inextricably tied to my own experiences as someone with mobility limitations.


 

Notes for Technical Appendix 1: Interview Methods

1 In general, people who were poor or African American preferred to meet in my office. For all persons residing in eastern Massachusetts, I offered to come to their homes or the most convenient place for them. To get there, I rode my scooter, took a wheelchair-accessible taxi, or was driven by my administrative assistant Ron. Ron generally dropped me off and made sure I was settled before leaving, then returned about two hours later. He did not participate in the interviews but often generated lively conversation as we left.back to text

2 People asked about the nature of my condition, how long I had had MS, what it was like getting around with my scooter, and other primarily logistical questions. With a few exceptions, they did not ask personal questions like those I had asked them. While securing the informed consent, I had told people that they could refuse to answer any question for any reason, but few people declined to answer my inquires.back to text

3 Although I attended the focus groups moderated by Ms. LeRoy, I did not speak until the very end, when Ms. LeRoy turned to me and asked if I had any questions. My questions generally addressed comments raised earlier by interviewees. I had been introduced as the director of the project, and everybody saw that I use a wheelchair.back to text

4 Other people had been equally articulate and insightful but could not participate (e.g., Sally Ann Jones, who lives in the Midwest; Walter Masterson, who had become ventilator-dependent; Esther Halpern and Tina DiNatale, who have transportation difficulties; and several, like Lonnie Carter and Mike Campbell, who had died).back to text

5 This was the first time that the neighborhood health center interviewees had met me, although I felt I knew them from having watched the videotape of the initial focus group. I introduced myself, updated them on the activities of Ms. Hall and the research assistant they had met the year before, and then explained the purpose of the follow-up focus group.back to text

6 At the time, the software available for conducting text analyses relied heavily on manipulation of computerized text files using mouse-driven actions. Intensive use of a mouse is difficult for someone with limited manual dexterity. My time was better spent reading through texts, rather than wrestling with the mouse.back to text

INTERVIEW with LISA IEZZONI, AUTHOR OF WHEN WALKING FAILS Why did you write When Walking Fails?

I've had multiple sclerosis (MS) for 26 years and have used a battery-powered scooter to get around for almost 15. On my travels, out in the streets, in shops, and particularly during long waits at airports, people frequently come up and talk to me about my scooter ñ asking me what it's like to use, how far it goes, how they can get one for themselves, their parents, or someone they know who is having trouble walking. They tell me very personal stories about themselves, family, or friends and their walking problems. Many say they don't know where to turn for advice. I'm happy to answer their questions. My scooter has transformed my life, giving me back some sense of independence and control. It's fun and gratifying to convey this message of hope to strangers.

But about seven years ago, I started wondering why people were asking me these questions. Why weren't they talking to their doctors or other professionals? I decided to reverse the tables, to go out and ask people about how walking problems affect their daily lives and about the barriers they confront to getting information and restoring their mobility. This book is full of their stories. I wrote it to help people like the strangers who talk to me understand their options and learn from the experiences of others facing similar situations. I also want to inform clinicians how they can better assist their patients who have mobility problems.

Does anything else in your background give you special insight into this topic?

I am a physician, a graduate of Harvard Medical School. So I know my way around the medical community and how clinicians think and what they are taught. From looking at the scientific journals that primary-care physicians read to keep up-to-date on medical discoveries, I know that very little is written about addressing walking problems or restoring mobility. Most general doctors have little experience prescribing wheelchairs or other mobility aids or working with rehabilitation professionals.

What do your patients think of you, a physician in a wheelchair?

Actually, I was never able to practice medicine, so I do not see patients. I was diagnosed with MS during my first semester at medical school, although I'd probably had the disease for several years. I graduated in 1984, six years before passage of the Americans with Disabilities Act. Back then, few medical schools helped their students who developed disabling medical conditions continue with their training. In fact, I learned quickly never, ever to talk publicly about my condition ñ a disease that, after all, modern medical science cannot cure! So for well over a decade, I virtually never mentioned it, although everyone can see I use a wheelchair. I finally realized that that kind of silence perpetuates the stigma historically accorded people with disabilities. And, in any case, strangers were not shy about coming up and talking to me about my scooter.


Returning to the book, can you summarize briefly what it is about?

Yes. About 10% of adult Americans who live in the communityñnot in nursing homes or other institutionsñ report they have at least some difficulty walking. Almost 80% of them say these problems will last more than a year. My book is about how these walking difficulties affect their daily lives, their relationships with family and friends, and their abilities to work and play in their towns and neighborhoods. The book also describes how doctors and rehabilitation therapists approach walking difficulties, how various mobility aids might help, and how health insurance policies often prevent people from getting necessary services and equipment. The book uses stories from the 119 persons whom I interviewed, as well as my own experiences, to explore these various topics.

Why is it important to talk about walking difficulties?

Almost everybody is touched at some point in their lives either by having mobility difficulties themselves or having a close relative, like a parent or grandparent, with trouble walking. Walking difficulties impede even the most trivial-appearing activities, like going to the sink for a glass of water. This obviously can affect people's independence and quality of life, let alone their abilities to earn an income, do household chores, go shopping, and attend church or social gatherings. It also compromises safety, increasing the risk of potentially life-threatening falls.

What causes walking difficulties, and who is affected?

The single most common cause is arthritis, with back problems in second place; together they account for roughly 35% of walking difficulties. Other common causes include accidental falls, heart and lung diseases, stroke, and diabetes. Apart from accidents, these are all chronic diseases that increase with aging. However, over 30% of people with difficulty walking say their problems started when they were under 50 years old. With the current epidemic of obesity among children and working-age adults, I fear that walking problems will begin at even younger ages in the future. Obesity is a leading risk factor for arthritis and diabetes, both top causes of mobility problems.

What can be done to improve people's walking?

The answer depends on the cause. Controlling pain, as in arthritis, and treating any underlying diseases are obviously critical. Then, as a basic principle, the more exercise the better, although people should optimally work with physical or occupational therapists to design the most helpful and realistic exercise programs. Therapists can also evaluate how patients get around their homes and recommend strategies to improve safety, like installing handrails on stairs or grab bars in showers or next to toilets. The safer people feel, the more likely they are to get up and move about their homes. Even such minimal exercise is important.

What if people's walking can't get better?

At some point, walking independently is no longer realistic for many people. The good news is that diverse mobility aids are now available, ranging from the old fashioned wooden cane to rolling walkers with seats and handlebar brakes to lightweight manual wheelchairs to scooters to high-tech battery-powered wheelchairs. Even something as simple as using a cane or rolling walker can help people off-load weight from their painful joints, allowing them to walk further and with greater safety. Choosing a mobility aid is an intensely personal decision, which must consider a variety of factors. People should therefore work with their physical or occupational therapists and physicians to select the optimal mobility aid for them.

Isn't using a wheelchair or scooter an admission of defeat?

I interviewed several people who said they would not use a wheelchair for fear they would never leave it. Then, I interviewed many others who said their wheelchairs had literally reopened the world for them. That was certainly true for me. When I finally admitted I could no longer go where I wanted because my MS had progressed, my scooter restored my independence and sense of control over my mobility. I now travel extensively with my wheelchairs, rolling without exhaustion or fear of falling. But starting to use a wheelchair is understandably a huge step. I recommend that people experiment, maybe renting a wheelchair to go on a special family vacation that would otherwise be impossible. Many wheelchair users still walk whenever they can, such as around their homes or work places. For example, I still walking in my home, relying for support on strategically placed furniture, doorframes, and grab bars.

What are the barriers to getting rehabilitation services?

Health insurers will only pay for rehabilitation services, like physical or occupational therapy, when patients are improving. However, most people with chronic conditions will not improve. In this instance, the goal of therapy is to maintain their current functioning or prevent further declines. Insurers will not pay for that. Patients must therefore pay for the therapy themselves, and many people cannot afford it.

What are the barriers to getting mobility aids?

Health insurers strictly limit payment for mobility aids. Medicare, for example, will only pay for a wheelchair or scooter if people need to use the equipment in their homes. But many people still walk around their homes, so they would not qualify for Medicare coverage. Unfortunately, salespeople often tell potential customers that Medicare will cover devices like scooters; people who purchase these devices may later find that Medicare denies their reimbursement. My private insurer refused to pay for my scooter asserting it was "a recreational vehicle analogous to a golf cart." I could afford to pay for my scooter, but many people cannot.

This will likely be an even bigger problem in the months and years ahead than it is now. Many people with mobility problems are poor and rely on Medicaid, the joint federal-state health insurance program for impoverished people. With huge state budget deficits, Medicaid programs are being drastically cut. Today, in many states, Medicaid funding of rehabilitation-related items and services is either being eliminated or slashed to the bone.

Hasn't the Americans with Disabilities Act (ADA) made things a lot easier for people with mobility difficulties?

The ADA and other federal and state laws have certainly improved physical access throughout communities, like access to public and private buildings and transportation services. However, there is a long way to go. Even on Fifth Avenue in New York City ñ in the fashionable district ñ some curbs do not have curb cuts. This means rolling out into dangerous traffic below the eye level of most drivers, which is very scary. New buildings are often technically accessible but not welcoming to persons with mobility problems: They don't have functional automatic door openers, and the accessible entrance is hard to find, hidden behind the building. All future construction should not only be accessible but also welcoming to people with mobility difficulties. Considering access up front is much cheaper than retrofitting existing buildings.

What do you think will be available in the future to help people with mobility problems?

Medical science is working hard to discover better pain medications, longer-lasting artificial knees and hips, and even ways to replace cartilage in joints. Treatments for heart and lung diseases, strokes, and diabetes might prevent their debilitating effects. Research in neurological diseases, like MS, Parkinson's disease, and Lou Gehrig's disease (amyotrophic lateral sclerosis or ALS), may someday offer substantial treatments, but no cures are yet on the immediate horizon. As noted earlier, the most worrisome trend is the epidemic of obesity especially among young persons. Without addressing obesity, reducing nationwide rates of mobility problems will be difficult. Remember that the top cause of disability in adults is arthritis, which is strongly related to obesity. Obesity also causes cardiovascular disease and diabetes ñ other leading causes of mobility problems. Reducing obesity will be the most effective strategy toward lowering future rates of walking problems.

New technologies will certainly offer innovative ways to restore mobility. Ibot, which uses gyroscope technologies to raise riders to standing height and climb stairs, and the Segway Human Transporter, which also relies on gyroscopes to carry standing persons, are two creative examples. However, these technologies are not right for everyone. Ibot will cost almost $30,000. Segway moves fast and therefore can be potentially dangerous, to riders and other occupants of sidewalks and streets. Hopefully, more inventors will address the challenge of improving mobility aids.

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